Thursday, January 5, 2012

There are only a few reasons you are looking at this article... Most likely you or someone you love is experiencing some odd symptoms whether they are settle or severe, whether they have been persisting for weeks or for years. What could it be? You want to know so bad... You need to know. After doing some research you were led to think that maybe what you or your loved one have is Multiple Sclerosis or MS for short. So what is the next step? I'll explain what you need to do to check if you have MS or not but more importantly is why you need to do this.

Most people experience a long diagnosis process when it comes to Multiple Sclerosis. This can be because they are avoiding the tests do to their fear of the answer they may receive or because of a doctor who is simply dragging their feet... Either way I can tell you this, you want an answer as soon as possible because the answer is not going to affect your symptoms, it is only going to affect the treatment you can receive for these symptoms. If you are afraid of the answer think of it like this, the sooner you get an answer, the sooner you can identify the source of your problem and pursue a remedy for it. If you put it off and it is MS, your symptoms may do permanent damage or cause you more pain for a longer period of time at the least. But maybe you don't even have MS! Maybe you will find out it is something much simpler like a pinched nerve that once is fixed will end your mysterious symptoms all together! The sooner you act the sooner you will know!

OK, so let’s say you are ready to go, but now your doctor is dragging his or her feet! Well then demand that you see a neurologist and get these test done, it's your health and you have the right to get tested! Something you should understand, no one out there cares more about your health than you do, so if you don't care? A doctor won't care. So get the tests done... worst-case scenario you can check Multiple Sclerosis off the list and start looking for what your problem really is.

Testing for Multiple Sclerosis
So, there are two tests you need to get done to be diagnosed with Multiple Sclerosis. First you need an MRI (Magnetic Resonance Image) of your brain to check for lesions (small white spots on your scan) that may suggest Multiple Sclerosis. An MRI simply involves you lying in a machine (picture right) that uses a giant magnet to take images of your brain. Unlike an X-ray an MRI machine takes images of many layers of an object instead of just one layer (surface). 

If you do have brain lesions then the next course of action would be a spinal tap (Lumbar Puncture) to confirm the diagnosis. This involves placing a needle into your lower spine (lumbar area) and extracting spinal fluid to check for myelin proteins that have broken away from your nerves in your central nervous system. A positive will confirm Multiple Sclerosis but a negative does not necessarily mean that you do not have MS, it just means that there was no myelin protein floating around the sample of cerebrospinal fluid (CSF) that was extracted when the test was done. Some people have to go in for several lumbar punctures (LP's) before they finally get an official MS diagnosis!

 Lots of people just dread the spinal tap (Lumbar Puncture) because of how horrifying it sounds! But I can tell you from experience, it's all just a bunch of talk. It really depends on the skill of your doctor. My first LP was "shocking" because my doctor did not seem to have a steady hand and she hit a nerve. My last LP? I hardly felt it!

First they have you lean forward on something while sitting upright or they have you lay on your side almost in the fetal position. Then they numb the area with local anesthetics and finally they place the needle in your back between two vertebrae (lumbar bones) to extract the needed spinal fluid. And... that's it. Quick and easy! You may experience a headache afterwards because they just removed fluid from your spinal cord that flows around your brain so there is now a change in the pressure on your brain.

Fun fact; without the spinal fluid in your head, your brain would collapse under it’s own weight!

The best thing to do to minimize the risk of a horrible headache is to drink plenty of fluids before the test, plenty of fluids after the test, and to plan on laying down for a day or two after the test. If you sit up at all, you will probably get one of the worst headaches ever! If you have to use the restroom I would just try not to take too long.

I know these test may sound scary but they are not. An MRI is really only bad if you are really claustrophobic because they slide you into a sort of tube and you have to stay steady while the machine is running. They will probably offer you medication to help you relax but I have never needed it and I am pretty claustrophobic. The machine makes lots of loud buzzing and beeping sounds which are kind of funny, I have a hard time not smiling like an idiot while I am in there. A brain scan might take around half an hour to an hour depending on if they are doing scans with contrast or not or depending on how detailed of an image they are trying to get.

A lumbar puncture only sucks if your doctor sucks! Well that and if you don't drink enough fluids and lay down for at least 24 hours... Use this time to wat TV, a movie, more go on a Netflix binge!

Bottom Line
Don't let the answer you may get or the tests you have to do scare you away... If you put it off it will only get worse in the long run and the unknown of your situation will torment you. Treat it like a bandage, the quicker you rip it off and get it over with the less pain it will cause. The sooner you get an answer the sooner you can find a solution.




138 comments:

  1. I went through the tests last fall. I had one large lesion and several small white spots on my MRI. My symptoms started with tingling and burning on my face and scalp. I also had the spinal tap and nerve tests on my hands, feet and eyes. My spinal tap came back negative. My doctor seamed certain that I had MS after seeing my MRI. He now says that I may have just a mono lesion and may not ever develop any other spots. The large lesion that I have is consistent with MS. It has the finger type feelers extending from the lesion. I am not afraid of the diagnoses of MS. In some ways living with the possibility of MS makes it worse. I am scheduled for another MRI in March of this to check for further lesions. I still have the nerve pain in my face and scalp.

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  2. Most people don't like fighting something they can not see. When you had your spinal tap were you experiencing a lot of symptoms or had they calmed down at the time?

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  3. This is where I am stuck. No lesions. Lumbar within normal limits. They still tell me I have MS. SO CONFUSED!!! I am diagnostically challenged.

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  4. How many LP's have you had? Have you had a spinal MRI yet?

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  5. I had one LP done NOT during an exacerbation, and recently had an MRI of the spine but haven't heard any results yet. This is all so frustrating! It has been three years.

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  6. I was having symptoms when I had the spinal tap. I guess it's just a way and see game. Hope all goes well for you and 2012 is your best year ever. Take care.

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  7. it is very possible to have MS with no lesions showing...

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  8. Well, that is a bummer. I don't think I will be able to get on any DMD until there is proof. So much for early treatment. It really is hard to accept at this point.

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  9. Yeah even if you do have symptoms while you get your spinal tap it's not a for sure kind of thing, just heard it betters you chances. "wait and see", man that should be the MS diagnosis motto, I remember saying that all the time. I still say it just not as much.

    And yes, it is possible to show no lesions and have MS, it's just not as common. Again, the lesion could be in your spinal cord instead of your brain, something to look into!

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  10. Did a slight update to the MRI section haha

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  11. Yup, it is possible for them to not show up on MRI (especially if contrast isn't used and if a lower power machine is used). It's amazing technology, but not perfect.
    Also, if tests are taking a long time, it's not necessarily because the patient is putting it off or the doctor is dragging their feet, sometimes its just how the system works and nothing to really be done about it (depending on which country you are in). I'm starting my 7th month now waiting for my spinal MRI appointment, just how it goes with publicly funded health care since everything is prioritized (many more conditions requiring MRIs for confirmation that pose a much higher immediate risk). Also helpful to get bloodwork done, check vitamin D levels (frequently low in MS patients), check for things like lyme disease, etc.

    The diagnostic criteria used for MS changed in 2010, here's a link with the updated criteria http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/full

    Really liking this new series of posts your doing, btw. Keep it up :)

    - Hannah (won't let me log in to comment for some reason)

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  12. I actually just received this article from someone else, man it's long! Trying to read and understand it all,going to look for a skimmed down version haha.

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  13. looking for answers. I had vertigo with spinning ceiling, headaches and visual disturbances last April, having gone on for a couple of months. Also had severe lkeg spasms for many months( but this I never bothered with, kept thinking I should have my calcium checked)Went to eyedoctor due to the visual diaturbance and room spinning.
    He sendt me for stat MRI of brain, called me at home, I had cerebral aneurism. ( MRI also shoved multiple leisons suggestive of MS. and an old silent stroke)
    My eye doctor found me a neurologist who is also a interventional neurologist. From here it was to prioritize, and aneurism first. To make the story short, I had cerebral angiogram, then endovascular embolization with stent to repair the aneurism.
    I have been feeling very sick for months, almost a year now. Verry tired, have forced my self to go to work,
    numbness in all 4 extremeties, pins and needles. unsteady gait, sometimes flushes of numbness, having problems with grasping( I do have a 10 year old problem with cervical herniated disc, but it has been stable for many years,) The worst feeling is that fatigue, and a constant feeling of vibration or buzzing all over body. I have told doctors, but no answer. Had slight elevated ANA, saw Rhematologist, had Vitamin D insuficiancy. Any how my neurologist have repeated MRI 2 times now, and no sign of new leisons. He said I need a spinal tap to confirm MS. We are holding out on that because I need to be Plavix and ASA ( to prevent bloodcloths since the aneurism repair) Tried to take me off twice, I had TIA and recently 4 weeks ago ended up with a small CVA.No big debilitatin neurologic effects, though I have taken medical leave from work, which is now running out. I have no more sick days or medical leave days.
    I have to go back to work but I am afraid due to my vertigo, I am a nurse and the work is physically and mentally draining for 12 hours. I have to hold on to railing i hall way. I feel like there is a tight rubberband around my legs. I cry all the time, I am afraid of hemmorhage from the aneurism site, new CVA and need to at least roole out MS. Suggestions?

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  14. Wow, that sounds overwhelming so I'm sorry. I hope your on some kind of disability at the moment? Secondly you already answered your question with what I would have recommend. Get the spinal tap. I know you have to wait but just try to be patient. In the meantime can they give you steroids? You are obviously having some kind of neurological issue IDK if they could necessarily hurt, maybe ask about them? Then get the spinal tap when you can and see what the results say because since you have had several other issues you definitely need to make sure you have a proper diagnosis before you start treatment in case it's something else that needs a different approach than MS would.

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  15. DONT READ THIS IF UR VERY ANXIOUS / SQUEEMISH ABOUT L.P. Matt i get why your tring to sugar coat this, but not all of us will appreciate it. I had a terrible experience with both LPs, it wasnt fun. I had a good idea of what would happen. My 1st experience was with my neuro who was suppose to be experienced. she didnt numb me up enough, i felt the severe pain & intensly gross feeling of long needle going into my back. i yelled & demanded she stop. she said "where does it hurt?" all i could say in my freaked out state was "inside". she pulled out needle, i went home still feeling those feelings for hours. My 2nd try was with xray guided equipment & what i found out half way through to be an inexperienced doc (apparently a supervisor wasnt there, took long time to find another scrubbed up doc, all the whie i was needled). The head nurse who prepped me (for 2nd time)was angry that my neuro screwed up, she insisted i didnt do anything wrong, shes said "we do this the right way here" also said: you have the right as a patient (and should always) to ask for an anestiologist (sp) to administer numbing shots, monitor pain etc... well this new doc had a needle in my back for over an hour. while i appreciated him taking his time (didnt hurt as much going slow) it took it's toll in ther ways. I felt sick to my stomach half way thru, this caused them to panic, worry bout a heeving patient with long thick needle in back (not good). they covered me with wet towels, felt better. The extreme uncomfortable, exhausting, feeling of being in one position for an hour with threat of extreme consequences for moving, was one of the worst experiences of my life. To make it worse, LP came back NEG, which means i have to do it again in near future. think i will need to be drugged for that.

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  16. Wow, well to be honest I have never heard of anyone having such a bad experience. With ANY kind of procedure you are going to have a percentage of people who handle it differently or have bad doctors, etc.

    I NEVER try to sugarcoat ANYTHING, I HATE that, I am seriously being honestly with my experience, it was quick, easy, and as far pain goes if I had to rate it on a scale of 1-10 (10 being the worst) I would give it a 6 and that is being generous to the pain.

    But you see, I had an experienced neuro doing this whereas some people get students or doctors who have not really done it much. SO it ALL depends my friend.

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  17. wasnt kidding when i said testing hell. Im desperate for a diagnosis for so many reasons (medical, AND disability case). Im tired of my (ignorant) PCP frustrations at my insistance i have MS. I proved him wrong with my hyperparathyroidism diagnosis, Im doing it again with MS. honestly equally frustrating is our (you & me) EXACT SAME hellish doc / healthcare experiences than i am with MS! sorry for chatting too much, thought it might help us / someone. im bored & passionate like u.

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  18. Haha yeah I just set myself up with a new doctor at Loma Linda so I am SO hoping for a new experience..... It's so old.....

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  19. Im looking at your? MRI above... I wonder what MS lesions are suppose to look like? 3 lesions showed up on mine, neuro sez "white matter changes" (neuro said "look it up if you want to worry"), never could find out exactly what all that ment. neuro sez "doesnt seem like MS",(said something about no brain shrinkage) "will redo after condition gets worse". any of that make any sense to you? just failed all the cerebellum function tests i found on YT (UH OH!)

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  20. Well FIRST of all brain lesions come in all different shapes and siozes and quanities. Another friend of mine with MS said her MRI looks like a Christmas tree, lots of MALL white dots everywhere unline my few medium sized ones.

    SECONDLY, brain shrinkage? That happens after YEARS and YEARS of MS if I am correct, I know I DON'T have that issue yet!

    Thirdly - GET A NEW NEURO, from everything you have told me, your is an idiot. Neuros tend to think they are one step down from God and get lazy because they can "just tell what's wrong with you with a quick glance". Get a new one, younger the better because they are less likely to be set in their way and to be following the old MS info from 30 years ago.

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  21. that neuro is young (32 i think). As you know, there arnt many neuros around (even here). Im lucky in that i live in one of the best places in the world (MASS) for quality of medicine & theres isnt any better state for ill ppl (for anyone who lives in a state without health care programs to help). I strongly suggest you move here. that being said, i have to say i think it's better for any MS person to get with a neuro that SPECIALIZES in MS. theres a group of MS docs near me i found recently, wiil be going there soon.

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  22. Haha I have plans to move elsewhere one day but good, hope you find a specialist!

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  23. The more I read about the medical system in the US, the more glad I am that I'm an Australian living in Australia. I hope Obama is re-elected because I fear for my friends in the USA if the Republicans take over again.

    Australia's Medicare system isn't perfect, but it's universal and it's there for everyone. Good luck to all who are working through the health system wherever they live. It's not easy, and it all seems to take a long time to get what you need.

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  24. Yeah it's crap here because it's all about making money not helping people. If the Republicans regain power and overthrow Obama Care I will no longer have health insurance because Obama care let's me stay on my Dad's insurance until I am 26, without it I think it ended at 20 and I am 21 so I would be without a paddle, maybe even without a boat!

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  25. Okay I have white spots scattered though out my brain my doctor said it could be the start of ms so he sent me in for a ver and an mri on my spine. But there were no spots on my spine. Can I still have ms with having no spots on my spine. I am suppose to go in for a lp and a emg in the next few weeks

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  26. It doesn't always hit the spine, when it does it can be bad.... That is what happened to me.... Get the LP though for sure! Even if it's only in your brain that should be enough for DX so get that LP ASAP

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  27. There are ppl with NO lessions on the brain who also have a MS DX. Leading them to believe it IS a vasular issue NOT primarily an auto immune / neurological one. about 90% of ppl with MS have a blockage / restriction in the neck veins that allow blood drain from brain. liberation teatment (CCSVI) allows the vast amount of MS ppl relief of their symptoms at least for short time (sometimes veins close up again).

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  28. I'm 13 years old and have been in riley childrens hospital 3 times already this year, they said I had A.D.E.M ( acute disseminated encephalomyelitis) and that it would only happen once.Well when I was in the third time the doctors said that they took me of the steroids to quick so they put me back on them but for a longer time period. I've been off them for about 3 weeks and I'm beginning to show signs of it again. My symptoms were and are back and neck pain, sensitive scalp, weakness in my legs, trouble walking, headaches, and the newest pain and tingling in my arms. Do you think its MS?

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  29. I think I am not qualified to have an opinion. But at such a young age I think you need to keep going into the doctors till you get an answer. Have you seen a neurologist? Sorry for late reply. How is your vision?

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  30. My neurologist didn't make me get an LP, he considers them a thing of the past. He said he would do one if it would make me feel better about the diagnosis and treatment, but he felt like we had enough with my symptoms and MRI results. I sure wasn't going to argue with treatment!
    Oh and thanks for your blog Matt, knowing I'm not alone means the world some days.
    Amber in KS

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  31. It's all about preference haha and yes, you are not alone, trust me!

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  32. I been seeing my Neuro and I just feel she's dragging her feet. I have had signs and symptoms for quite some time and what she does is sends me for blood work like Vit D which is VERY LOW and now sending me to see mt eye dr to see if I have fluid behind me eye's since I been complaining of headaches. She's been seeing me every 3 months, for last 9 months but I just feel she's dragging it along,and in my eye's if something is there like MS it's just going to get worse the longer we wait to do an MRI or Spinal tab. I have asked her about an MRI and she keeps saying well lets do this or that first. Getting SICK OF IT! am I wrong to say that or have patience's?

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  33. I am sick of doctors, they just drag their feet. "Diagnose and Audios" as they say, that's us MS patients. Just have to be aggressive. Most the neuros I have seen hate me because I won't sit on the back burner, I call and call and call.... I wish you luck, I do, it's frustrating...

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  34. This is an incredibly helpful beginning. I SO appreciate this. I will check in after we get testing done. Your positive perspective and approach to MS are encouraging. I am saying a prayer for you. Be strongER my friend. Talk to you soon. MLE

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  35. thank you, glad to be of help, wishing u luck!

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  36. Firstly let me thank you for writing such a positive article . I have been ' ill ' for 8 years with mainly all over pain , especially in the neck , fatigue , headaches , face pain , numb tongue and strange patches on my head ... with my hair folicles hurting !
    I have seen a neurologist 4 times and each time he has sent me away and after a physical test has concluded nothing is wrong . Now my vision is affected and I can't see properly . I have been through periods of balance problems and have broken my finger due to this . I have fallen down the stairs , have bruises from walking into doorways and have lost my strength in my arms .
    I remember asking the doctor who first diagnosed me with ' Fibromyalgia ' how am I going to live with this and he said you will find coping mechanisims and he was right .
    I have during my relapses worked part time but when I am having a bad time I just close the door to the world and paitently wait . I don't know how long each period of illness will be and the headaches are increasing . Finally my doctor sent me to Ear Nose and Throat sepecialist who after pushing a pipe up my nose and saying that everything was ok and there was no reason for the face pain has sent me for a CT brain /face / neck scan . The question i really want asked is will a CT scan show any legions ? or is a CT scan used to determine whether one has Giant Cell Artritis ? Hoping someone out there can answer my question.

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  37. Wow... Hmmm.... I think you need an MRI because a CT will not show much.... Demand one....

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  38. Good information Matt, however I do disagree with Obama Care. The only good item out of the plan is that you are covered to the age of 26. Other than that, we all may be waiting for 7 months for an appointment.

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  39. Haha well, I don't talk about politics here, I will just leave it at that :p

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  40. I'm suffering daily..I have m.s the lesion that is causing me all my pain troubles..is at my c3 c4 area cervical spine..my arms go numb burning tingling..theb my arms get stiff really stiff can move them.2 seconds later my fingers will move by themselves..then I get this rumbling feeling in my chest an neck..I'm loosin my mind..this us every damn day 2 to 3 tymes..been on tysabri for 2 months..its not help..Neuro is,a specialist but he seems lost .

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  41. well... Tysabri doesnt improve anything, just keeps it from getting worse... But man... Maybe look into alternative treatments? Diet, exercise, massage therapy, supplements, etc?

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  42. I REALLY DONT KNOW WHAT TO DO. TWO YEARS AGO WOKE UP WITH VERTIGO THAT PUT ME IN BED FOR 4 WKS. THE VERTIGO NOW COMES ON AND CAN LAST FOR WEEKS AT A TIME. FATIGUE, BLADDER ISSUES, SEXUAL NUMBNESS, HEADACHES AND BACK OF THE HEAD AND NECK PAIN. BRAIN MRI WITHOUT CONTRAST DONE 4MTHS AFTER THIS STARTED AS THOUGHT I HAD A ACOUSTIC NEUROMA. DOCTOR HAS NO MENTIONED FURTHER MRI OR TESTING. CANT COPE

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  43. I am sorry, I hear it all the time, not having an answer has to be the worst. LIMBO. But I know its hard, just try to be patient and your answer will come, just cross what ever you can off the list! Push for all the test you can and just say that you want to cross things off the list!

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  44. Hi Matt and everyone, I am glad I found this page. Too bad there are so many of us affected. I just had my first LP done today and my back is hurting a little. Luckily, I never had the headache I fell asleep for a couple of hours and that might of helped. The test itself went smooth, of course, my doctor made a joke about still being able to do one. He is 66 years old and has a strange crass bed side manner that I appreciate. I was diagnosed two months ago with RRMS I also have Restless Leg Syndrome but the Requip is a lifesaver or leg saver. When I first starting having symptoms I went to the Mayoclinc website and found it to be accurate as far as leading me in the right direction. I've had all the tests and the LP was my last one other than the yearly MRIs. I just wanted to say thanks for the page and suggest that everyone find a doctor that they trust. My original MD before my neuro did nothing and I found an MD that cared about my whole being and she referred me to my neuro and some really good doctors/people.

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  45. Yes, nice to meet you though it is a shame haha. Glad your LP went well, the headache sucks!

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  46. My doctor has been ridiculously vague with me and my symptoms. I started out around November 2012 with some minor leg tremors that stuck around for a few weeks and then disappeared. They came back around New Years 2013 and persisted through the beginning of the year. I finally saw a doctor when I had this odd sensation that every nerve in my body was twitching and moving despite my standing still. Doctor did a bunch of physical tests, took some blood, and told me that based on the physical exam I could have something as minor as a Thyroid disorder (this proved positive with a blood test) or something as serious as MS. As it stands, I'm on thyroid medication and my doc wants me to "let the medicine work in my system" before I undergo any other examinations. My anxiety levels are at about a 10 - the possibility of MS is all I can think about. It's literally ruining my life. I have no idea what to do. I'm a 23 y/o male, btw and I teach full time - I do not have time for this sort of stress in my life.

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  47. Have you seen a neurologist? Ask for a referral and be the boss, take charge, it's YOUR health and your dock obviously has no experience here if he is mixing this up with a thyroid issue.....

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  48. Holy headache Batman!!! Thought I'd stop back for an update it is day 5 and the headache is finally going away. Why is it that when someone tells you to be still all you want to do is get up?

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  49. "Don't Push The Red Button" lol! Glad it is fading though!

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  50. i need to get a test for ms but can not have a mri as i have a pace marker so what can they do for me now.

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  51. I would imagine an LP (Lumbar Puncture, AKA, Spinal tap)

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  52. Wish I had demanded a MRI scan , I had suffered from headaches for years plus i had terrible fatigue , doctors kept dragging their feet , then i started getting bouts of numbness on the R/H side of my face , first time they said it was Bell's palsy , other times they sat looking at their computer monitor giving no real answers .

    Then I went numb down all the R/H side of my body , this they explained was due to a nerve trapped in my neck , said the same the other times it happened ! then i started getting unsteady on my feet , dizzy spells , weak legs , right knee giving way ...NO REAL ANSWERS :-/

    it actually got to the stage were i stopped going to the doctors , then this one time i had to go because i prescribed migraine tablets , i had to go for a revue , I saw a new young doctor at the practice and when i spoke to her everything come flooding out of me about what i have been experiencing , she booked ex rays for my neck and an appointment for the Neuro he set up the MRI and said he wouldn't be seeing me again unless something showed up on the scan , two weeks latter got a letter saying an appointment had been set to see him again , so worried i phoned my GP to ask for the results of my scan , they told me i had to make an appointment

    New GP not there anymore so had to see one of the regular ones , went to them , said they did not have the results and to phone in the evening , i did so and the person on the other end said still no results , so i got off the phone and rang the Neuro's PA she faxed them strait through to my GP , five minutes latter got a phone call to go for a chat , the GP told me they had found a mass on my brain "said nothing about MS" but it was not cancer huh!

    When it came to seeing my Neuro , me thinking Ive probably got a small tumor , when i walked into his office a scan was on his monitor and i thought , I hope to god its not mine , as it had white patches all over it , i asked if they were tumors , he replied , no they are whats called brain lesions , you have MS .

    Sorry about being long winded about it , but this is the kind of crap i had to go through to eventually get diagnosed , so if anybody is experiencing symptoms and you feel that no one is listening please please DEMAND THE TESTS ! ......i wish i had.....

    Mal

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  53. Yeah, a few doctors said a pinched nerve in my neck at first as well. I say demand an MRI, it's either you or your insurance paying for it so what do they care? At the worst, you can cross something off the list, that is how diagnostics works isn't it? Crossing things off the list?

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  54. i have not been to the doctor yet but i have been having pains all over my body and headaches for the past 2 years and also recently have been very fatigued even though i get a good nite sleep i seem to sleeptil late and still feel tired throughout the day does this sound like ms?

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  55. I can't say if that sounds like MS, it sounds like it could be many things, maybe not classic presenting symptoms of MS but everyone is a tad different you know? You need to see a neurologist and maybe have an MRI if he/she thinks it is necessary.

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  56. Hi. I had my ANA levels tested and an MRI done a bit over a year ago because of MS-like symptoms I'd been experiencing off and on for some time (vertigo, fatigue, inner nostril lesion, confusion). The MRI showed nothing out of the ordinary and the bloodwork was fine. I was so sure that I have MS that I thought perhaps they'd mixed up my files with someone else's. However, my symptoms all seemed to go away until a couple of weeks ago. Last week, I had several days straight of blurred vision and had to squint to look at my computer screen. Over the weekend, I couldn't sleep at night due to muscle spasms...and when I have been able to sleep, I wake up with my muscles all tensed up. However, I will admit that I am a bit of a drinker. I enjoy a few beers on most nights and/or a galss of wine. I'm wondering if I should go BACK to see my doctor regarding the MS or if perhaps all of my symptoms are alcohol-related. Obviously I can do a simple experiment and stop drinking for awhile, see what happens with the symptoms, but they come and go anyway and present differently the next time around, so I'm not sure that would provide a clear answer. Your thoughts? Oh - and thank you for this forum. It's very enlightening! :)

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  57. Haha WELL, simple actually, dont drink for 2 weeks and see what happens OR just see your doctor haha...

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  58. Sounds like u are very even keeled, so to speak. I have had every test,only showed up was white matter in brain, lp, thoracic spine neg etc. Repeat MRI in brain, say white matter been there for a longtime most probably, chronic alcohol ,or cocaine abuse, rehab for both in 97. Still 3months symptoms consistent with ms most have gone away though.found heart chamber problem last week. Cardiac MRI next week. Idk at 52 after pro tennis tour and triathlete, injuries seemed to have slowed this old guy down lol another MRI brain 4months, had two brain angios also. I feel like a radiated Xmas tree lol.

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  59. Haha maaaaaybe, maybe, you need a new neurologist??

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  60. Ive been trying for about 7 months to get an MRI. i have had head aches, tender spots on my head, just little patches of numb (pins and needle) spots on my hands and feet, i see spots and flashing lights, im off balance alot and i just dont feel normal. And the doctors always say, those symptoms dont sound like MS? which is what i fear i have. Idk what to do, they all blow it off as anxiety!

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  61. Well you would think they would do an MRI if they suspect MS or not because that all sounds neurological... I would just DEMAND one if only to rule some things out you know?

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  62. Ever heard of anyone having a spontaneous brain bleed (subdural hematoma without known injury) at the early onset of MS? I am not "diagnosed" with anything yet. FRUSTRATING! Went in due to facial and left hand numbness - doctor did MRI thinking he would find nothing and said he about fell over when they found out my brain was bleeding!? I stayed in hospital 3 days for observation - no surgery cuz bleed was "small" and it "should" re-absorb. One Neuro was stumped but then saw some "spots" on the brain & neck. Went for Spinal Tab (LP) & it was OK. That Neuro is now off for 3 months & current Neuro doesn't think MS but also has no other ideas. Literally said I needed to eat better, loose weight, exercise, get more sleep & NOT play tackle football.

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  63. I tracked my own blood pressure and it went high for me so I had to push the doctor but finally have a BP med which has brought it back to my "normal" which is low.
    FRUSTRATION is no medical "professionals" are following up or researching this out of no where brain bleed, numbness or spots on the MRI. I am 45 yr old female who has been healthy!
    The 2nd Neuro suggests I come back in August (which will be 4 months) and do another MRI so he can compare.
    In April, after they found the brain was bleeding, I had 3 MRI - regular / arteries / spine & 2 CT - one with and two without contrast / head & neck & BLOOD work and was told a Lymph Node at the base of my skull was enlarged but it probably will be fine.

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  64. Oh...the Neuro did say I have a slight imbalance issue (when I stand with my feet together & close my eyes I fall over - this was one of their "tests"). He admitted that was "strange" but no further follow up.
    A friend is pushing me to go see their MS doctors but I am not diagnosed, so I don't know what to do next.....
    OK I am done! Thanks for listening!!!

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  65. Wow, I would say see the doctor, he would know more than anyone else because I have never heard of a bleed being related to MS... I wish you luck!

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  66. My doctors never seem to take me seriously. A rheumatologist told me that it was just fibromyalgia and told me to learn to live with it. Now my neurologist said my MRI was clear, so he's just going to have me come in to talk about pain management. I asked for an MRI of my spine, but they said since the brain MRI was clear that it wasn't necessary. :/

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  67. Well, that IS protocol but ONLY because if you brain is clear then often the spine is clear but there is no order of operation for where the damage occurs. What you want is a spinal tap, even if the mri is clear a spinal tap might reveal something unseen. You are more likely to see stuff on an MRI and get a positive on a tap when your experiencing symptoms.

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  68. Hello,
    Thank you for your article. It was nice to read something informative AND positive, as I have been scouring the I Internet lately looking for answers.

    I am wondering if dull headaches are ever a presenting symptom for MS? I am a 32 year old female, in good health, with no family history of MS. I started with a sharp, stabbing like headache on the left side of my head 11 days ago, which lasted for 2 days. On the third day, it became a dull headache in both temples. Not severe, and not really even painful enough to warrant ibuprofen. But persistent and irritating enough for me to notice that its always there. Also around the third or fourth day, I noticed my legs were feeling heavy and tired (no pain).

    Fast forward a day or two and I began feeling very tired all of the time, and needed a nap to get through the day (unlike me). As of two or three days ago, my arms started feeling the same as my legs - just fatigued/heavy/tired, but not painful. Also during this whole time, I have been having night sweats. At times I wake up with slight tingling sensations, but have attributed that to sleeping position. My head also feels floaty - sorry no other way to describe it. Just yesterday, the headache seemed to move behind my eyes. (I need glasses...my dog chewed mine a few months ago and I have not yet replaced them. Can't wear contacts due to astigmatism in both eyes.)

    Last night I began really thinking I have something neurologically wrong with me, due to the way my arms and legs feel, so I started reading a lot about MS. Of course last night I kept waking up with various parts of my body feeling tingly and even right now as I type, I am feeling tingly sensations...not I'm the same spot. Kind of jumping around.

    Two days ago I went to my doctor and he said I am having chronic tension headaches, and he has seen patients have a bout of tension type headaches that last for weeks and then disappear. He says he is not concerned about my muscle fatigue or weakness in combination with the headaches, that maybe I have some underlying virus without any other symptoms. He told me to come back in a week or two if this all persists.

    Sorry for this long message, but I am just looking for advice. I have no problem with going to my doctor and demanding tests or answers, if it seems as though I should. I have struggled with anxiety and panic attacks for 10 years, so my family thinks this is all anxiety related. My doctor probably feels the same, as he told me to take Xanax for the next week (I haven't).

    I have never had a headache that lasted more than a few hours, so going on day 11, combined with the other minor disturbances, has really got me paranoid right now. Any suggestions? Could any of this realistically be early symptoms of MS?

    Thank you for taking the time to read this.

    LS

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  69. Haha yes, i think your message was longer than the article! But it's all good :p

    ANYWAYS, I used to get really bad tension headaches, I drank a lot of coffee, the bad ones would last days at a time. I have not had one in years since I drink lots more water and rarely have coffee anymore. As far as the books go, headaches are not really a symptom of MS nor do I really hear about it.

    Tingling is but COULD be anything so I would not get all worried, You could also be fatigued from headaches and maybe not sleeping well?

    I would give it that week, see what your doctor says, and if all else fails, demand an MRI just in case. All it can hurt is... nothing. You would at the least rule something out.

    GOOD LUCK!

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    1. Thank you for replying :) And sorry again, I'm definitely long winded!

      I ended up going to the ER a few days ago because I developed sudden neck pain, which really scared me! They did blood work and a CT scan, said everything was clear, and sent me on my way. My doc called 2 days later and confirmed everything came back fine, and said to wait it out for a while longer.

      Tingling has gone away for the most part, and now just some minor muscle twitching in my thigh. Also floaters in vision (both eyes). I guess I'm just attributing this all to stress/anxiety at this point?? Out of curiosity, can MS be ruled out as a possibility from a CT scan?

      Thanks for letting us use your knowledge :)
      I hope you are doing well and feeling as good as possible!

      LS

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  70. Three months ago I started having an ache like pain or burning pain in my upper back under my shoulder blade. It is only getting worse I now have pain in my upper arm and elbow and pins and needle feeling almost all the time. I have been talking to my doctor since 6/24 for this problem. I went on the web md app and put in the symptoms that related to my arm and pinched nerve and ms was what they suggested. I read more about ms and relized that I have many of the other symptoms of ms also. I had a doctor appt today and I talked to her about it being that and she just said she does not believe that that's what it is but never asked what the other symptoms are. I am now going to see an orthopedic doctor next week. I have also noticed that the skin on my arm doesnt like being touched like drying off after a shower it is such an awful feeling. I have also been seeing a mental health doctor that says I am bi polar but I read in an info page ( msaa) about ms says that ms is often missed diagnosed as bipolar because of pba. I dont know anything about all of this. And my doctor just made me feel like I shouldn't mention it agin because thats not what I have. What do you think.

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  71. Well IDK, I think you just need to see someone else and run the tests, get an MRI. Make a list of your symptoms, some doctors dont pay attention when you say "I think it's MS" because they don't like patients playing part in the diagnosis, it's like they are insecure and get offended that some "un-educated patient" out diagnosed them. You just need a good doctor who will do an MRI...

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  72. IDK where your comment went, but a CT is pretty much useless with ruling out MS, are you sure your not mixing it up with an MRI?

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  73. No...they ordered a CT scan to rule out a brain bleed I guess. They don't seem concerned about a possibility of MS at this point.

    LS

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  74. hmmm, i dont think CT shows lesions, it doesnt show depth, you would need an MRI...

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  75. Hi, My name is Diana i am 29 yrs old and I have been dealing with joints pain, nausea, vertigo, ringing in my ears, blurred vision and headaches for the past 3 yrs now. At 1st I thought I was just exagering like I usually do so I didn't pay that much attention to it and learned how to live with those symptoms.

    2 weeks ago, I came home from working a 16 hrs shift (I am a Nursing assitant on ICU) , was in my bathroom and next thing I know out of nowhere I had this awful fatigue I never experienced before, a fatigue I can't even describe, then the L side of my head started hurting and I started throwing up. Then the L side of my body got numb and was on the floor almost passing out.
    I waited a few minutes until I started feeling a lil bit better, I dragged myself to my room and go in bed and turned my fan on high. I thought I was having a stroke but decided not to call 911 Because I kept thinking I was just tired from doing a 16 hrs shift.
    Didn't go to work the following day which was Sunday, had Monday off, went to work Tuesday and around 9:am the L side of my head started hurting again agod such a pounding pain! I called my Doc n they sent me to the ER, had a CTSCAN done didn't show anything so they referred me to see a Neurologist.
    Neurologist ordered an MRI, MRA and MRV...
    I was still convinced that I was just too rired and that nothing was gonna show in the results.
    Well, for my surprise the films showed 2 white spots on the L side of my brain, one is pretty big and it is located right where my head always hurts which is close to the middle. The other one is small and is close to my frontal
    Lobe and again, it is exactly where I feel this awful pain.
    Neurogist said he wanted me to have a LP (Puncture Lumbar) done, also sent me to see an Specialist for my L eye and ear because my vision in L eye is messed up since I had the episode and the constanly ringing in my ears and the annoying pulsating thingy in L ear that comes out of nowwhere is really driving me nuts!

    I forgot to mention after the episode I had, I haven't been myself at all. I am tired all the time, the 1st 4 days all I wanted to do is sleep and sleep, I am having trouble concentrating and I forget things very easily.
    I am not denying I am a lil scared of what's gonna happen if I am test positive for MS, I have a 3 yrs old boy and a 10 yrs old girl. And I am also concerned about my brother who is only 23 and is always complaining abou the same symptoms I have.

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  76. Wow, well, my best advice is get the LP and see what it says. If it's negative that does not mean your in the clear, just that nothing showed up that test. Some people need several LP's before they get their positive.

    If it is positve, get on a treatment RIGHT AWAY to prevent permanent damage and a lost of people live life unaffected. You just need to find your treatment.

    A lot of doctors are old school and play it by the book and will tell you MS is not genetic, doctors who are up to date on the latest research like my MS Specialist, will say that's just not true, there are so many people with family members with MS. One of the first questions my Neuro asked me was "So who in your family has MS?" so he should probably go in and ask for an MRI if he has those symptoms, make sure he doesn't mention that YOU might have MS or they will blow him off, I would just keep it to HIM.

    But again, I would not worry because as long as you are PROACTIVE with your treatments, eating well, and exercise, your fine. I know people with MS who do TRIATHLONS!

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  77. Appreciate this post. I am having most of the symptoms of MS & I have been emphasizing to my doctors that I need an answer for all my random, undiagnosed symptoms. I had an MRI last year with no lesions. I am having one again but it is frustrating bc that doesn't mean nothing is wrong.

    I hate to be a hypochrondriac but MS is the only thing I can find online that fits all my symptoms closely. I wish they'd go ahead and order a spinal tap so I can have some peace of mind (although like you said it doesn't necessarily rule it out). I feel like I'm crazy when I describe all my problems to my doctor.

    I'm a few years from 30 and I can't find any reason for why I'd be having all these issues. As everyone can relate, it's frustrating because these kinds of issues affect your daily life. Has anyone had problems with doctors not ordering tests? And if a spinal tap or MRI doesn't show anything, I'm at a loss of what to try next. Diet changes, exercise... nothing seems to be helping.

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  78. EVERYONE has issues getting doctors to order tests... They don't like it when patients think they know what they need... Are you seeing a neurologist? A regular doctor won't cut it. I am sorry your going through this process, it takes some people YEARS to get diagnosed... You just have to keep pushing... Try going in for an MRI when you notice your symptoms are bad, there might be more of a chance of spotting something...

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  79. I am frustrated was reading comments I have horrible muscle and nerve pain goes down arms and legs face and hand and feet go numb joint pains so bad can barely move I have sometimes when feel good other times I hurt so bad wanna cry I call flare ups my pain goes all way down my spine all muscles and nerves seen act up all once I went doc had tests they said blood normal MRI showed a small spot wasn't sure what was then said I had low lying cellular tonsils went surgeon he said they were fine was told I could not have ms if it wasn't on MRI I am so sick being in so much pain been 10 yrs now and they treat me like I am crazy I still work and took care kids but it is so hard and I need help any advice on who go to and where can get help

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  80. That is not necessarily true, it doesn't always show on an MRI if it's not that active, even a spinal tap can be inconclusive... It seems it can hide.... Better to go in for tests when your symptoms are really bad. At the same time many things mimic MS so it's hard to say....

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  81. I live in Virginia Beach I desperately need help. I am on disability but due to misunderstanding when on ex's cobra fighting medicare to get insurance. I had a neurologist that has been 99.9% sure have MS I also have chronic late stage lyme so everything is a mess. I believe I now have MS as a result of late diagnosis although lyme can mimic the differences are vast. I am one of the toughest cases. This last flare of which I am still in I suddenly am slamming not bumping into walls no coordination. What threw me off was the amount of pain that I have in hips and legs and I think another diagnosis was more than I could bear. Reality is I lost most color vision 13 out of 15 color plates missed my vision and equilibrium so bad . I had a work up almost to this numbness tingling that was not normal with my lyme. One eye wanders and I cannot eat and 9 years in I HAVE TO USE A stick. Is there a foundation to help me test again my spinal test showed the random protein at the highest level there was at the time cannot recall but thing 0-5 I was 5 . Hard when one disease mimics another but I know my body I am so tired of seeing my decline and they need to look at my lesions. complications are that the fact in the proccess I was diagnosed with a meningioma benignn tumor in the brain needed radiation. years passing I have multiple lesions on my brain one big enough although have to pick up last results. seemed lit up like tree to look at. When you suddenly out of the blue cannot walk drive and you know it is not normal to whatever else you may have its time to see the best end this here and now. I cannot deteriorate more...please please any ideas of foundations for ppl on disability without insurance I cant live like this. I am usually the go to person advocate, I have to resolve this, if anyone has a dr I can travel to with a heart who takes new patients but may do some pro bono work pls tell me. Any worse I wont be able to care for my son. no family separated no insurance just humana part d medicare A if there is one dr out there who has knowledge about diagnosing and will help understanding in the meantime I have no money and despite my best efforts no insurance,,,? Is the hip oain normal? I Think I have the Plurisy thing again which now I wonder if is your MS hug, after 9 years I know something has changed so dramatically. I want them to put aside the other issues and look at this for now.I cant focus anymoer on screen . like has thrown plenty of cure balls. They (DRS) felt had auto immune disorder... here it is although evenings are worse for sure had to crawl to sofa to sleep because so dizzy. my FB Carolyn Booth Thomas I barely check my reg email quicksal4u@aol.com but if on FB you can find me that way too..... heeeeelp pls Sincrely C

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  82. Me personally? I am not sure... You need to find another doctor for a second opinion and just do another LP and MRI if you can... You have a tricky situation indeed :/

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  83. I have had numerous crazy symptoms for about two years starting with periods of very problematic recall difficulties that would last for two to three weeks, then subside leaving only a slight but more permanent deficiency which I have been attributing to aging, I'm 50. I have had ongoing issues with phantosmia (smells which aren't there) and it has progressed to a partial loss of smell; I used to hate the smell of bleach, now I can hardly smell it. I have had Doctor's suggest that I may have neurological problems and I new what they were suggesting, but I just couldn't bring myself to go down that path. I am at the point now where problems with blurred vision, dizziness, bladder issues and twitching, have impacted me to the point where I can no longer ignore my symptoms and I have to get tested. I am not worried for myself rather I am concerned about how this could impact my family and marriage. I have decent health insurance but no long term care coverage and I am afraid that I will ultimately have to leave my wife in order to protect my family from the financial liabilities that accompany diseases like MS. I know that I am jumping the gun with these thoughts but I've been going through this for a while and sometimes you just have a very intuitive sense about things like this. Anyone else have similar situations, concerns or advice.

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  84. I think you are definitely getting ahead of yourself... Once on medication and once you are proactive about your health, MS usually does not make life all that crazy. Most people can work and you would never know they have MS unless they tell you! So just take it one step at a time, I don't think you are anywhere NEAR the point of even THINKING about leaving your wife so don't jump the gun on that one.

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  85. Thank you Matt, After excepting what I need to do next, I am actually beginning to feel a slight sense of relief as I have been trying to keep my problems to myself for a very long time and am now having a difficult time continuing to hide it. My wife is probably beginning to think that am totally loosing it as I have been so scattered as lately. I am however still worried about how she is going to take it. I hope that she sees my condition, not as an added burden, rather I am hopeful that she will have faith in my ability to handle my own issues positively. I hope that you are doing well and please know that the time that you have taken to provide this information and and forum is truly meaningful to those who are struggling.

    Cheers

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  86. How she will look at it will be determined by how YOU look at it. If you treat it like the end of the world she will take it much harder. If you treat it like it is no big deal, "just another life obstacle" then she will be more relaxed. It's not like it's terminal cancer haha.... And thanks!

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  87. I could use some advice. I had my first MRI in sept. It came back with multiple lesions in the white matter and recommended a cervical and spinal MRI to investigate MS. There was also an aneurysm. I have since had an emergency ct scan which showed multiple scattered foci of flair high signal in the cerebral white matter and periventricular lesions. The neurologist I saw had me touch my nose a few times and said nothing is causing my symptoms (left side weakness, tingling, dizziness, occasional speech difficulties, my quadriceps give out, extreme fatigue etc.) he said I could see a neurosurgeon for the aneurysm (8mm), but he doubted he would do anything. I have since had an MRI angio which again mentions the multiple foci of white matter flair high signal and suggests possible MS. My problem is my family doctor doesn't seem to want to do anything because the neurologist said nothing is causing this. He hasn't ordered the spinal MRI and when I asked him about this he said MS is all in the brain??? I am frightened. I am in Canada and cannot pick and choose my doctors. There is a shortage of doctors in my area so I am lucky to have one at all. I cannot make appointments to see a neurologist with out a referral from my doctor. Can anyone offer advise please.

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  88. MS is only in the brain? Hahaha wow, someone has to go back to school. You need a second opinion but more important than a spinal MRI is a spinal TAP (limbar puncture) to check for elevated protein levels

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  89. For all of you who have the pleasure of getting what you want from your doctor be thankful. I'm in the military and since my doctor out ranks me I don't have the pleasure to disagree with them. My symptoms are were: month long abdominal spasms that disabled me because I couldn't stand up right, numbness, EXTREMELY weird reflexes, breathing difficulties, etc. My wonderful military doctor thinks this is all stress and is in the process of discharging me. My only hope is to come back at the VA after I get out and get a diagnosis. He's the real "salt in the wound" through a law back from the 40s, nothing will ever happen to that doctor because military doctors CANNOT be sued for neglect.

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  90. Man... I am sorry, that's utter BS... Although I will say, it doesnt sound like a TYPICAL MS presentation but it's definitely NOT stress. Stress is just an excuse for "idk what you have, lets see if it passes"...

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  91. Hi Matt,

    I'm on MS treatment I figured out 2 years a go but still can move my leg as i want. i'm 27 years old female i hate sitting home. I live in Ethiopia there is no information abou MS and i couldn't be able to get good treament. what do you advise me?

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  92. Hi! Are treatments available there? Otherwise, people who don't do treatment do diet and exercise, a total life style change. Avoid stress and heat as well as they are huge triggers for MS.

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  93. I had my 1st MRI with contrasts but no lesions. My dr is going to do a LP next, but I was told by some that you had to have lesions to be diagnosed! The symptoms really started hitting me hard about 4yrs ago, with chronic fatigue, pins & needles, even my scalp felt like it was falling asleep & left side weakness & vertigo. I have also had bels palsy 8 times on the left side of my face, but would go away with steroids. But in the last yr my symptoms have worsen horribly! I now have drop foot & partial paralysis in my right foot & walking with a cane. Could this still be MS without lesions? Oh and severe left eye pain!

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  94. I had a MRI with contrast, but no lesions, but my dr is going to do a LP next. I had symptoms for about 6yrs chronic fatigue, pins &needles even to the point that my scalp feels like it goes to sleep, weakness on the left side, had bels palsy 8 times on the left side of my face which would go away with steroids, was checked for stroke thank God is wasnt & severe left eye pain, feeling of vertigo about everyday, & the last year I have developed drop foot & partial paralysis in my right foot! MS is not something I want, but even my neuro said he is 95% sure it is, but I was told if I didn't have lesions it could not be MS & others say it can take years for them to show up! I'm only 37 and now walking with a cane & wondering if I will ever get a answer! But from reading some post it sounds like I have a pretty good doc!

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  95. Well I am not a doctor but I can say this; I have heard of people with no signs of lesions being positive on an LP so do the tap and see where it takes you!

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  96. Hi Matt: I appreciate this blog you have set up. Now, for my situation. Three years ago my neurologist said that I do appear to have MS; I had two lesions of the "finger" type that were definitely MS. So he sends me to the University in our city for a second opinion. This doc not so sure so he orders a bunch of tests. All tests rule out anything else and in fact many of them point to autoimmune and/or MS disease. I had another MRI last Friday but I think the radiologist misread the entire scan (or dictated for someone else's scan) because it does not make sense. One for sure thing that screams "misread" is the fact that he commented on a Series and Image that DON'T exist on the scan whatsoever. So I wrote my doctor a note telling him how sick I have been for four years with MS symptoms (newest one is that I have lost most of my sense of smell over the past year or so). Five years ago I presented to this doctor with a history of optic neuritis and in fact never recovered the center vision in my left eye from 20 years ago. I sought out medical help because the eye began to really hurt, along with some facial pain. As of today, the pain is SO horrendous that I am desperately trying to get this stupid neurologist to help me! He had NO comment for the "misread" MRI. Also on the MRI, I have a rather large lump on the top of my head (I have asked every doctor about this since I got it about two years ago; they all say it is a blocked oil gland - huh?!). As an "incidental finding" - at least - the radiologist should have noted it; he did not. It is a solid mass that looks to me as though it is pressing on layers below the skull. As far as the conclusion of this new MRI, the radiologist said nothing is changed from three years ago. Well, I have noted several white spots throughout the images; they are there on different series and images - plain as day. I am SO sick and I am tired from trying to explain to people that I am "pursuing a MS diagnoses". Do you have any suggestions for me? Thanks!

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  97. Hi, very simple answer; GET ANOTHER OPINION FROM ANOTHER NEUROLOGIST. Try to get a lumbar puncture, if you can along with a fresh MRI. Sounds like you just need to clear the table of all your old work and start fresh.

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  98. Thank you.... I do have an appointment with another neurologist on the 17th of March. It will be A LOT of explaining to do, and that is why I am exhausted just thinking about it! It blows that I have spent five years with this neurologist - who backed off his original diagnoses (and it was a diagnoses because he even staged it as PPMS). I have all of my cd's and reports. Should I bother getting any doctor notes? I am thinking not since you advise that I start fresh. Another day today that I wanted to go visit my parents but I am too fatigued! Why would a doctor put me through such agony for so long?! And the referrals he gave me were jokes too. The hematologist kept asking me why I was there and that I didn't have cancer. I was like, "um, I was referred here for follow up to abnormal bone marrow blood work, and I never ever said that I thought it was cancer; neither did my other doctor." He patted my head and sent me on my way. It turns out that this is an autoimmune issue I have that sometimes goes with MS, but they all just dismissed it! In addition, nothing else explains the muscle spasms, the numbness, trigemminal neuralgia, swallowing difficulty, esophagus spasms, and the list goes on.....

    Thank you for commenting back so quickly. I don't think I will get another MRI so quickly, but I do think that this one needs to be read correctly.

    Lilly

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  99. Well I mean, bring all you have but let them do what ever they want over again is what I mean. Good luck!

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  100. I was having seizures and have lesions on my brain, so I had a spinal tap two days ago to diagnose my illness and I actually enjoyed it. It felt like a deep tissue massage from the inside out. They said they had never had a patient like me before.

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  101. G'day, I know this is an old post, but I am just now seeing it. I am in limbo at the moment, waiting to find out what the outcome will be, i am a little different in that I was initially dx with graves disease, had the radioactive iodine treatment, then went to hypothyroid instead of hyper, which brought on similar symptoms (so I am told) of MS, ended up in Hospital even, these were my symptoms according to Hospital report. (mind you I was told to get to the Hospital asap as my GP suspected a stroke at the time): 3 week history of generalised malaise, lethargy, and bifrontal headache associated with 2-3 week history of left facial droop, right arm weakness and clumsiness and dysarthria. Found to be hypothyroid following a recent radioiodine ablation therapy.
    At the hospital they began to treat my hypothyroid with thyroxine (spell check) high dose and alot of the symptoms have subsided a little, note, a very little.
    At the hospital I was given a CT scan, a MRI scan and a spinal tap with the following results:
    Best appreciated on the FLAIR sequence, there is periventricular high signal seen together with scattered foci of high signal within the deep white matter seen in a pericallosal distribution. This is more pronounced than what would be expected for a patient of stated age of 43 yrs
    conclusion:
    Best appreciated on the sagittal FLAIR, there are multiple T2 hyperintensities seen at the collosal septal interface with a perpendicular orientation. These do not demonstrate significant enhancement. the main differential for this would be that of demyelination. Progress imaging is recommended.
    MRI suggestive of idiopathic demyelination but no active lesions, further invstigation once hypothyroidism resolved.
    LP (spinal tap) demonstrated elevated protein but normal glucose, no xanthochromia, oligo clonal bands pending.

    soo, my neuro believes that some of my symptoms have nothing to do with the hypothyroid but wants to rule out other things, says she is leaning tward MS but will not give me a definitive dx till I go for more tests. Am due for another CT angiogram (spell check) of the Circle of Willis to rule out other things (not sure what that is) and did some more blood tests.
    I was just wondering if any of these results (or if you think any of these results) sound like it is MS. I am not worried if it is, have done alot of research, and I am more just a person who is like, well ok then, lets get a move on and start doing something about it, but as you can see, the waiting game is what I am in and I can't do the "lets get on with it" thing yet.
    not sure how the "comment as" thing works so I am just hoping this posted.
    Be well



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  102. I woke up one morning in so much pain from my right hip down i couldnt walk i was taken to the er and while sitting on the bed i started not to be able to feel my left hip down. they gave me xrays and sent me on my way. Well then i would start getting dizzy and lightheaded my right eye started going blurry. now im just in constant pain i have numbness and pins and needles feeling in my feet and hands and most recently has migrated to my upper thigh and knees. it doesnt how much or how little of sleep i get i am still exhausted like i never slept to begin with. i used to have perfect posture not i cant sit up straight without my neck shoulders and back burning, and i have also had tremors for years. Sometimes i get tunnel vision too. i dont understand what is going on with me and quiet frankly im terrified im 22 and fell like im 80. they told me they think i have fibromialgia now theyre telling me they dont think thats what this is they only thing wrong with my blood work is low vitaman d and i got an mri and that came back normal then they did xrays the only thing they found was that the lower part of my back my lumbar was slightly tilted to the right. What questions should i ask the doctor when i go? im just in such constant pain and just want someone elses opinion. has anyone that is on this forum who has MS have you ever had symptoms like this? I just am so sick of not knowing because my sons 18 months old and I never have any energy to play with him and bring him for walks like i would like to and if i do i am in extreme pain for days afterwards.

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  103. I would ask for a lumbar puncture despite the MRI results. That can tell you a whole lot more than bloodwork. Just insist on it so you can get some "peace of mind"

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  104. Hey Matt,
    Just a short question..
    Do the MRI lesions ever just disappear or go away?
    My brain MRI had multiple ones on the brain that actually made my partner and I go "oh wow that many" some big, some small, but I was wondering, if you get another MRI (which I have not had yet) do the lesions go away?

    also do you know what other things can cause lesions on the brain MRI, they have ruled out lupus, lyme and something called sjornes (spell check) syndrome, I do not get migranes, and am not stressed as I'm a pretty down to earth person who takes things in my stride, I know some of these can cause lesions to show, my hypothyroid is being delt with and is on the normal side now (not sure if hypothyroid can cause lesions on the brain)

    just me being curious

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  105. They can if it's MS depending on how well your treating your MS. Not sure what all can cause them but a lesion can be anything that does damage to your brain so the list is huge I am sure but yeah I am not really sure....

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  106. My email isn't working, can you email Mr at Sarah.red.king@gmail.com with yr opinion

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  107. Hey Matt.
    So ever since I "pinched" a neck nerve 5 months ago, I've experienced a wide variety of symptoms that have come and gone. Numbness in various different places, vertigo, burning sensations in various places, sleeping way too much, GI issues, leg spasm/pain in one leg (along with a burning feeling at the bottom of my foot).

    Now it's all culminated in a recent issue this week where my stomach has gone NUMB, like almost completely and I have had trouble swallowing (mostly solids and pills).

    My doctor is very concerned, he thinks its neurological. I had a "clean" brain MRI done a couple days ago, I didn't get to see it and I'm not sure what power the machine was at. No contrast as well, I'm guessing? Not sure, first time doing one.

    They're going to do a spinal MRI on me soon... does this sound like MS?? Pretty scared, but your website has helped me feel calmer about the possible diagnosis.

    PS
    It's *very* exciting that you're moving to Colorado! I'm originally from there and I miss it to death!

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  108. Hi! OK, first of all, if they did contrast than halfway through your MRI they would have injected something into your arm via an IV line they placed before you started. Secondly, Clean brain MRI, will be interesting to see if your spinal MRI shows anything, TYPICALLY, it hits the brain first but everyone is different. BUT, with that being said, it is obviously neurological but with no brain lesions I would guess it's not MS, the only way to really have a better idea is for them to do a spinal tap/lumbar puncture which can't totally rule it out but it can better help diagnose the issue (a positive IS positive and a negative just means there was no myelin protein floating around in your spinal fluid [CSF] at the time of the LP). I would push for that depending on the results of your spinal MRI. And yes, 2 weeks and I am there, can't wait!

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  109. Well from everything I've read, MS (or some variant) seems the "most" likely. Guess we'll see... trying to remain positive despite all these recent issues. Okay, so my Brain MRI was without contrast! Bummer. I will let you know how my spinal MRI turns out.

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    1. Yes, that is how I confirmed my diagnosis after my MRI.

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  110. Well, just don't stress, I know it sucks, but find a way to pass the time. I am sure they will start treating with steroids soon no matter the cause, so that should help. Let me know for sure

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  111. So I've had terrible itching under the skin of my fingertips and tips of toes also , had fatigue all of the time. At 28 that shouldn't happen , finally went to see a Neuro who ran mri and said I have 3 legions on the brain, have a lp scheduled but now my insurance has just been cancelled (due to lay off 6 months ago) Neuro said she was 90% sure of ms because of the mri. I don't know what to do, what step one even is. Hopsitsl can do lp but says they will have to Bill me for it. Just came across this site and everyone seems so helpful so I figured I would ask for input on my situation, thanks

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  112. step 1 (after official diagnosis) is START A THERAPY. The sooner you start the more likely you are to keep it from ever getting bad. See if she feels comfortable enough (if you can't get LP" to DX you with just the MRI so you can start a therapy.

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    1. Just found your site. Love it, helpful to know I'm not only one in limbo. Worst feeling ever ď did lp yesterday. Maybe they will see something?

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    2. Thank you. From what I hear limbo seems to be the worst bit of time there is. I was "lucky" not to go through it with my diagnosis but I am in it right now over a test result... With an LP, a positive means you have MS but a NEGATIVE means nothing, it just means that there was no myelin protein floating around when they did the LP. Some (not many) people have to do multiple to finally get a diagnosis. Hopefully that is not the case for you!

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  113. This comment has been removed by a blog administrator.

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  114. Hello I am a 29 years old, basically I have some questions.. I began experiencing symptoms a few years ago. Strange electric like shooting pains, random nausea, bad backaches, neck stuff etc... I do not have a history of seizures, but recently within the last 5 months I began to have them, partial ones pretty regularly. . Doctors aren't sure what is wrong they thought Fibromyalgia at first. But with the seizures & now my eye doctor says I have Swelling in my left optic nerve. He seemed to be worried. Especially since I am having seizures, migraines, weird black spots in my vision (not floaters).. I am waiting to get an MRI, I think because I had one CT scan that came back clear they figure I'm fine. I don't even know how long the stuff with my eye has been going on. I get odd tingly sensations that can be painful, in my hands, toes, legs etc.I am wondering if this could still be MS.. Will the MRI help show what they need to see? Also is there an possibility MS can begin without signs of lesions?

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  115. Hi! OK, where to start. MS can present (in some cases) without lesions. A CT will show you NOTHING as it's more for brain structure which does not show brain tissue abnormalities such as an MS lesion. HOWEVER, I have heard of many odd presentations of MS leading to a DX and though your obviously having some neurological issues, it doesn't sound like MS BUT I am not a doctor and even I know all it takes is one lesion in a weird spot to cause some weird symptom. All I am saying is I have never heard of anyone presenting with seizures or back/neck pain.

    All I can say with certainty is you need that MRI and chances are it will point you in the right direction. IF they suspect MS based on your MRI then they will want (or should) to do a spinal tap to confirm as there are different things that can mimic MS. ONE STEP AT A TIME. MRI first, then based on what ever they find, you will have a better idea of what to do and what to look up.

    Best of Luck

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  116. Thank You Matt I appreciate your Response and Advice! I have not been getting many other answers... Alright I will certainly just keep looking into it and not settle till they have a clearer correct DX for me! But yes One Day at a time :) Best of Luck to You have a Great Day

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  117. Hey Matt. Great article. I think I may have Ms. I have constant burning pain in my both my arms and legs, headaches, light headed, and always seem to be tired. I am a 25 year old male and am desperate for answers. Had these symptoms for over 3 years. Had an MRI on brain and they didn't say anything about legions but it was awhile ago. Just saw a neck surgeon and They ordered an MRI on my spine. Will that show anything that has to do with MS? My symptoms seem to get much worse after drinking. I am Alsoreceiving treatment at a chiropractor for my Atlas vetebre. Not sure if that is related. any answers or information you have is greatly appreciated. I Also have depression and anxiety but I think it's because I'm in such pain. No doctor has mentioned Ms to me yet but after a little research seems like what I have but not sure. Thanks Matt!!

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  118. Hi, any vision issues? MS can affect the spinal cord but not usually first. Now, with any sort of neurological issue, drinking will definitely make it worse... Probably should stay away from the bottle till you know what is going on haha. Good luck!

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  119. Hi, all. My dd started having symptoms in March of scalp tingling, Headaches, tingling in her arm and right eye blurred vision as one gets at times when first waking up. Her MD thought it was Thoracic Outlet Syndrome, but PT evaluated her and said it wasn't. MD ordered an MRI which showed a 7-8 mm white spot near the corpus callosum perpendicular to an axis and the report said indeterminate and MS can't be excluded. Next she saw a neurologist early June, that doctor said she doesn't have MS as per the medical history questions she asked her and ordered an EMG and Vitamin D, B-12 and Folic Acid lab tests....all those were within normal ranges and EMG was too. She saw an ARNP for a 2nd opinion as soon as she could, since all the Neurologists seemed to be booked out for 2-3 months. The ARNP, was very thorough, she said, and also looked at the MRI with her and said she was suspicious of some 7-8 other areas, none showing white, but suspicious to her, like a shadowy area. She refused to order a LP, saying they aren't definitive, same as the Neurologist said in early June, who also refused. Neither would the ARNP order another MRI. The ARNP said she did not want to diagnosis MS until lab tests she ordered come back. Those include: an ANA-Lyme-West Nile-RPR with reflex-TSH-TSH Titer-ESR and T4 free. Also the ARNP said to come back in 3 weeks and bring someone with her to discuss starting medicines as a possible preventative because even If it isn't MS, it seems like she is headed there. The medicine is called: Tecfridera taken as 1 tablet twice weekly. 2nd med choice she told her about was Avonex. The office called back the next day and said a neurologist in the office she consulted re: the MRI agreed with her thoughts. This is all so frustrating. We don't see why they won't order the LP and also won't order a Visual Evoked Potentials test I had her ask about. These, from what I have researched, are all part of the usual tests used to rule out MS! Any thoughts or similar experience from anybody else this may have happened to? Appreciate any advice or input please. Thank you.

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    1. Hi Deedz,
      With this talk of the medication 'just in case' with no definitive diagnosis and an apparent unwillingness to do further testing, I suggest a possible approach. Refuse medication (which realistically would be an enormous negative for dd if she does not have MS, and may not be warranted depending on the type of MS and status regardless) until you have the additional tests done that would potentially clarify the situation. Mind you, an LP is not required for the typical diagnosis (I never had one), and a negative result does not guarantee no MS. Yes, realistically, if she did have one, and it was positive, it would be helpful in clarifying the situation. A second brain MRI, plus a spinal MRI could be quite informative, as would be the evoked potentials test, if it is easy to identify a currently affected area.

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    2. True, an LP is not REQUIRED, BUT, it will confirm MS as there are many things that LOOK and ACT like MS with an MRI alone (such as the much talked about Lyme disease). Most doctor's will always follow up an MRI that looks like MS with an LP just to confirm. And again, a negative means nothing, a positive means YES. Some people have to do several LPs before they get a positive.

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  120. I would demand it and if they won't give in find another neurologist. I mean, just tell them it's for peace of mind and to better rule things out (even thought a negative result can not rule out MS).

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    1. Hi Matt, thank you for the quick reply! I am heading to her state this week, so as to go to the next appt. with her....and believe me, I will be demanding, BUT, so many doctors etc. have such hidden self-esteem problems and an inflated ego to go along with that., so I'm not expecting much! See, I don't know about where you live, but in her area, it takes a month at the least to get seen by a neurologist, even with a Dr.'s referral, with most saying a 2-3 month wait for an appt. I got very lucky in getting her the 1st one in early June in a city an hour away at hospital with an MS clinic.......but since that Dr. said she didn't have it, and no need for an MRI, my dd and other dd who drove there from her home in a nearby state to be there in case she had the LP, had no ability to pursue it with her. So now, even at the next appt. and with me there and with the ARNP's mindset that LP's are not worthwhile...it will mean more wasted time trying to get in to another Neurologist. My husband had a radiologist friend even look at the MRI, yesterday and he is a Harvard Grad, and part owner of this own business. His opinion and recommendations were 50/50 chance of MS, get an LP and another MRI 3 months from the prior one in June and monitor her symptoms. Had a chance to look through your site and am amazed at you and your abilities and perseverance! Wonderful strong and positive mindset too! Thank you for doing what you do. :)

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    2. It takes lots of time and patience. It sucks, no other way to look at it. It might even take multiple MRI's and LP's... I wish you guys luck. But thanks you, it has been an interesting journey.

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  121. My wife of nearly 22 years died from M.S. in 2009 after suffering from the condition for almost a quarter of a century.

    There is still no cure for the disease and not really much in the way of effective treatment but the research through the M.S. Society continues. The problem with research is that it requires funding.

    So that's what I'm doing. I am walking up the entire west coast of Scotland (approximately 500 miles) to raise money for M.S. research in the hope that someone else would have better chances than my wife did.

    Please take the time to share my story. Thanks.

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    1. Thank-you Robert. Your efforts are greatly appreciated.

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  122. Hi,
    I have been searching high and low on the internet for some answers. About a week ago after months of feeling exhausted I had a sudden onset worst migraine ever, it debilatated me, the shear force of the pain caused me to vomit, I was rushed to hospital, they were worried about a bleed but ct and lumbar puncture was clear. Since the Thursday I have had pins and needles in my left arm, headaches on and off, dizziness at times, nausea and fatigue. I havent felt myself since. I had a second trip to the ed with a second ct thinking it was a bleed but it was fine. They managed my pain for 24hrs spoke to a neurologist and wanted to see me the next day and do an mri. My referal to the neurologist was thumbled and fell through. On contacting the gp she had spoken to the neurologist and they tried to tell me my continuing headache was a rebound result to taking to many pain killers, which I arhued as Id been very careful, they then said theres no need to do an mri as ive had two clear ct's. They ultimately tried to link it woth an old head injury that settled a long time ago and want to put me on a long term medication that is an anti-epilitic to prevent me getting headaches. The neurologist is not interested in seeing me. I attempted to discuss my other symptoms with the gp ie the pins and needles which never subside even if the headache does and she was stuck on linking me to taking to many painkillers and putting me on this medicine to stop that and deal with daily headaches. I am concerned because this was a sudden downhill in my health after months of fatigue, i have been very careful with pain relief so dont believe its rebound headaches and if it is my other symptoms dont fit. I dont want to take a daily medication long term if it isnt going to help me or improve my health. I dont know where to turn for help with my gp and the neurologist making this decision on me. I desperatly want to get better and back to work and looking after my little one, so I went hunting on google and found almost all of my symptoms match MS. I know my symptoms match many other things as well, but I wanted to see if anyone out there has been through similar to me or whether I am barking up the wrong tree, without my gps help I feel lost and want to find answers so I can get back on my feet! Any help, advice or info would be much appreciated!

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    1. Paul, my advice as a nurse of over 30 years, is to seek out and keep seeking out a doctor who will listen to you and don't let them just blow you off. We each know our body best, they do not, so keep on pushing forward...it is YOUR health, not theirs. They forget, at times, they are not God, are human and can be wrong. Do not tell the next or next doctor you have seen any others, and seek help until you find a doctor able to give you a diagnosis that satisfies your concerns and makes sense! Best of luck to you, hope you get the help you need soon!

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  123. The numbness and tingling could be MS. I would say a CT will not give you the correct visualization of the brain to identify MS lesions, so for that you would definitely need a spinal and brain MRI. Focus on the numbness and tingling sympoms when you talk with someone if you want to successfully be referred to a neurologist.
    This important to rule out, as if it is MS, the anti-seizure drugs will be doing nothing to prevent further neurological damage.
    Some of us with MS do have headaches, but there doesn't seem to be enough of a pattern with those for doctors to track and clearly associate.
    It sounds like you're a bit trapped in the 'doctor thinks he knows my body better than I do; but I know this isn't normal for me; and I'm not an idiot who takes my medications incompetently, though they're focused on that' situation. It's a frustrating situation. If you can direct the conversation to 'concern for ruling out the possibility of MS due to the tingling and numbness' and focus on that with the doctors, it might help you get the neurological assessment and MRI. If it's not working well for you with these doctors because they are stuck on an unproven conclusion, suggest that you feel you need a second opinion. Good luck! It is also important not to have a 'stuck' doctor, as even if it is not MS, the symptoms could suggest other things like tumours or infections, also very important to investigate.

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    1. I have no clue why they use CT's when trying to determine MS. My only guess is that they want to rule something else out because a CT is going to give you more of a structural image (good for looking at bones for one example) where and MRI will show you many layers of the actual tissue where MS lesions reside.

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