Matt's Multiple Sclerosis Story

Hi, my name is Matt and I was diagnosed with MS at the age of 20 in August of 2010. This is my story in progress!

So What is Multiple Sclerosis?

Multiple sclerosis: A chronic autoimmune disease that attacks the central nervous system which consist of the brain, optic nerves, and all the nerves in the spinal cord.

Why is My Chest Tight?

Tight chest? Feel like a car is parked on top of you? Well that might be the MS Hug...

Multiple Sclerosis Therapies

Learn about the available drug therapies (disease modifying drugs, or, DMD's) for Multiple Sclerosis.

Watch Me On Youtube!

Click here to visit my Youtube channel; I am in the process of updating it and getting it going again but for now you can see some old videos!

This is This is Why I Fight

When I showed up in a wheelchair to see my new neurologist after a 6 week stay in a physical rehab hospital and asked what I needed to do next to get back up on my feet she told me to "get used to the wheelchair, it's the coarse of the disease". Good thing I didn't listen!

Saturday, July 19, 2014

Why All the Pictures Are Gone

Well I feel dumb. I was annoyed that on anything linked to my Google account (like my phone and Google Plus) displayed images from Picasa and I had no idea how! "What is Picasa?" "When did I sign up for it?" So I logged in and deleted everything on the account.

"Are you SURE you want to permanently delete these photos?"

I had read a warning from someone on some forum saying don't click "yes" because in about a week you will realise you made a mistake and need to retrieve them from your trash folder. Of course, I didn't take this person's advice.

"Are you SURE you want to permanently delete these photos?"
"Pft, ehm, yeah! I clicked delete didn't I?"

POOF! All gone.

Well, come to find out, when you upload an image straight to Blogger it is saved in a Picasa Web Album... So... The reason pretty much every single picture going back to February (I think) 2013 is gone is because... I deleted them... If I had listened to the advice on that forum I could just undo it and it would all be back but no... it's all gone.

So I am not sure what to do. I don't have back ups of most that stuff and even if I did it would take ages to go back and repost the pictures to over a year's worth of posts and if I wanted to recreate an image for all those missing post? Forget it! Wow... I feel so dumb... I destroyed all that work... It's... Depressing...

My blog is totally falling apart and I am not sure if I should put the time and work into restoring it or the time and work into creating a new one... No, I can't do that, I have to fix this one, too many post going all the way back to my diagnosis. All I know is this blog is going to be under construction for a very long time...


Tysabri 18, Job Hunt, Migraine, and More

Wow, I have not been on top of my blog. I have been so busy for a change and it’s wiping me out! There is so much I wanted to blog about that I either forgot about or never got a chance to. So let me try my best to catch everyone up on how life with MS has been on top of trying to start a new life all together.


First of all, Tysabri number 18! On July 14th I had my first infusion of Tysabri in Colorado and it went well. The nurses were nice, I didn’t have to get stabbed a bunch of times for someone to get my IV catheter in, and aside from a lack of TV’s to pass the time it was a nice little center. Although it is primarily used for cancer patients I did briefly meet a lady (who was on her way out) who was also on Tysabri; Number 60 something! Wow that’s a lot! 5 years? Anyways, they drew some blood before my infusion to run a CBC (complete blood count) which looking at the results, includes a lot of what my SoCal neurologist checked for (but not nearly as much) and since I got the results online instead of from a doctor I had to (well, chose to in case something was off) look it all over myself. Everything they checked for was within normal range and was pretty much the same when compared to past blood tests so that is good.

I have been doing a lot of research on different types of testing like the typical JCV ELISA blood test VS the JCV DNA PCR CSF (cerebral spinal fluid) test and I still have a lot to learn but it has been making me feel more comfortable and “in control” for lack of better terms. I am trying to get to the point where I can look at my test results and know exactly what all the numbers mean that way if I can show that I have a clear understanding of it all it will be easier to say “Hey I would really like “this” test for reasons X, Y, and Z”.

Oh yeah, I am working on a new first aid kit since I had to leave a lot of what I had behind. I already have pretty much everything and more that the Red Cross recommends you put in a kit but I still have a few more things I would like to have on hand but I will talk about that in a later post.

So now, the job hunt! It’s been years since I was last in this game and I’ll tell you what; I don’t miss it one bit. I just want to be at the interview stage instead of the application stage. My uncle has been helping me with a resume and we should be going over it this weekend so once I have that ready to go I can finish up a lot of the applications I started online. It’s weird because after all I have done in the MS community these past few years it’s hard to go back to looking for a job where I am on the bottom of the totem pole but at the same time, that’s kind of what I want; a normal, steady job that will make me think of something besides Multiple Sclerosis for once! A job where I can hopefully be social again! Then, on the side, I will continue my MS work and maybe a bit of photography once I have a car.

Now I did have a phone interview the other day with an employer that was nowhere near my first choice (but I applied because I just want a job) because the shop is full of glass and fragile merchandise which is not good for someone with MS due to clumsiness. My reception was horrible so I felt like I was more focused on finding a good spot to hear my interviewer than on actually hearing what she said! So I was sure it didn’t go well and the next day that was confirmed by an email that informed me (in a very professional and polite way) “thanks but no thanks”. Oh well, it was practice and way more than I would have ever got in SoCal.

So I am desperate to start working and get off SSI. I had to go to the Social Security Office the other day to confirm that I actually reside in the location that I said my new address was… For whatever reason they could not do it over the phone so I had to go in, what ever, it was a nice day out. After waiting an hour at the front of a line to get into the building once it opened, I grabbed my ticket and sat down. It was funny because where I lived it was like trying to get into an airport; empty pockets, take off your belt, walk through a metal detector, get hand scanned or even a pat down if the detector goes off, THEN you sit down. Not here. The people who were waiting to be seen were all nice, no “ghetto” people causing a scene you know? Even still, the security guard who opened the doors was pretty rude to the elderly couple in front of me and the clerk I spoke to immediately gave me attitude despite the fact that I was being super polite. She was so rude and unwilling to hear what I had to say that I just signed what I had to sign, went home, called the Social Security Administration, waited an hour to be helped, and asked my questions there which were all politely answered. So the DMV was really nice but the SS Admin? Not so much… Guess someone missed her cup of morning coffee…

I WANT A JOB NOW!!!! Ugh… got to be patient.

So yesterday I had a bit I wanted to get done but the previous night I could not sleep thanks to a… “bad” dream. I woke up and felt a tad nauseated but that went away after I showered and got ready for my day. I went to the store to grab a few things and when I got back I could feel a headache coming on. It didn’t feel like anything serious so I didn’t take anything. I ate breakfast and by time I was done my headache was getting much worse so I took some Tylenol and Ibuprofen but instead of it calming down it got worse and I started feeling nauseated again. I covered my head in ice and just laid on the floor until it had all melted. Wow, now light hurt my head; I was getting a migraine… yay… Despite my not wanting to, I laid down and watched a movie. By time it was done I felt much better! I got up to grab some more water and then it hit me; dizziness. For a second I felt like I was blacking out and than the headache rushed back into my head and my stomach grew heavy. So I just sat back down skipping both lunch and dinner because I felt so sick! What a waste of a day! I pretty much sat and laid down all day! After a good night’s rest (thanks to some meds, ehem…) I feel all better today.

Today I prepared my meals for the week and put them all in plastic containers in the fridge. I measured/calculated all the calories because I have lost so much weight lately and I need to put it back on. I am well used to the elevation and it’s lack of oxygen but now I really need to start rebuilding muscle so I am still trying to figure out what I will be doing and how I will be doing it. I need to make sure I am not burning more calories than I am taking in each day… fun…

So for now, that is all I can think of, but I am posting a lot more on my Facebook page (which you can find on the right hand column of my blog) so if you don’t see a post for a while on my blog check out my Facebook page to see what is keeping me busy!

Sunday, July 13, 2014

Why Was I So Jumpy the Other Day?

Since I figured out that I was so sensitive to sudden, loud noises because of something called “stimulus-sensitivemyoclonus” I started taking Klonopin (Clonazepam) and it changed my life. No longer was I jumping at every sudden noise, spasming like I was having a seizure, dropping things, or spilling coffee on myself out of shock. It has continued to work since I started taking just 0.5mg who knows how long ago; my quality of life has improved so much that I lost track of the date because I have been doing things I couldn’t handle for the longest time!

So why oh why was I reliving this nightmare the other day? “Hey Matt,” and I jump. “Next stop,” the bus starts to say and I jump. EVERYTHING was making me jump! Did I forget to take my Klonopin? Nope, I am super on top of my medication. What changed? Oh… wait… I know what…

I have been taking Nuvigil again and it has been working OK.  That day I took Nuvigil and had a cup of coffee. I am pretty sure those two factors in my pretty sensitive life equation are what did it. I usually don’t drink coffee now unless I don’t take Nuvigil on days like today where I don’t have too much to do compared to the week ahead. I think the other day I was just craving a cup of coffee and that must be what set off the jumpiness…

Though I am certain not everyone has this effect but would I recommend mixing caffeine and Nuvigil to most people? Probably not depending on their symptoms. I will definitely be keeping a closer eye on this possibility. Anyone have any experience with this? Share below!

Sunday, July 6, 2014

Time to Look for a Job (With MS)

Now that the little health scare over being forced offTysabri too soon (also when I am just about to start working on getting my life going in a new state) is over I am desperate to find a job. I want to work! Earn a steady check! And while I am wetting my feet in the life of steady employment I wouldn’t mind having something to complain and stress about besides MS! The days have been going kind of slow for me as waiting to start working, saving money and building a new life has been like watching water boil; I can’t stop thinking about all of it now that I am not thinking as much about my Tysabri,  so time is just dddraaagggiiinnnggg! I am trying to be patient but I feel much like a child waiting for Christmas morning; I am so close I can taste it!.. or… feel it? I don’t know but you get what I am trying to say!

Tomorrow morning I am walking down to my first desired place of employment to apply and since I know the job pretty well and have some related experience I am really hoping I can at least get an interview (to see how much an employer may ask about my unemployment gap/MS). Everyone seems to be hiring out here everywhere you go but since I don’t have a car yet a job within walking distance would be great. Hopefully I can get early shifts as well so it will be nice and cool out plus, that is when I have the most energy. I am not really worried about the MS but though because there seems to be a high incidence of Multiple Sclerosis in Colorado (though I am not sure of the number yet) so public awareness of the disease is a little higher (or so I have read).

Other than waiting for all that to start happening, not too much is new right now. I have been loosing so much weight lately so I have been trying to pack in the calories to all of my meals. The other day I was at the store looking for some sort of protein shake and I found one specifically for putting on weight; 630 calories per 8 ounces (0.30 deciliters)! I had a cup last night and it was pretty good but soon after I felt really tired. I had one this morning after my walk and the same thing; I because so tired that I fell asleep on the floor! What the heck? Is my body actually struggling to handle all the calories in that small drink (much like turkey makes people tired during the holidays)? Is there something else in that shake that is affecting my health? I have never had a problem with other protein shakes but who knows? All I DO know is tomorrow I will skip it before I head down to apply for that job. Anyways, wish me luck!

Thursday, July 3, 2014

My Stress Over JC Virus Status is Over

So for the previous week or so I have been stressing over how my new neurologist wanted to take me off Tysabri and screw with my cocktail. Well after talking to my SoCal neuro and his nurses about my test results and doing lots of research I found I found out my odds of developing PML are just the same as I explained in my previous post.

So recap; considering I have only had 17 infusions so far and have no past history of immunosuppressant use like chemo (According to the Tysabri website steroids don't count) my odds of developing PML now that I am JC positive are still less than 1/1000 which is the same as if you were JC negative). If you want to count steroids as an immunosuppressant on this chart than my odds are 1/1000. This confirmed everything everyone told me except this new MS clinic.

The place is nice looking and my neurologist is a kind individual but she truly underestimates my knowledge on Multiple Sclerosis and my ability to know when I am being BS'ed. I saw her yesterday and she knew I wanted to stay on it (because I called them and told them after they called me leaving a message saying I need to come in and choose a new therapy) but despite all her scare tactics I wouldn't budge. She kept bringing things up and for every reason she gave me to get off now I gave her a solid answer as to why it's better to stay on. Finally she told me “well it's not really the JC virus that is dangerous, its the fact that you are now at a greater risk of developing something called P M L-” (all slow like I had never heard of it) I cut her off;  “Progressive Multifocal Leukoencephalopathy? Yeah I know all about that, in fact, I am writing an article on it right now for It would be more dangerous for me to get off so early as I am pretty much a guarantee to rebound.” “well that doesn't happen often” (BS) “and we are looking at a new medication that might safely help to switch people from Tysabri to”. “Campath?” “ no... Ala-something-mab; they currently use it to treat leukemia or something like that”. “Yeah that is Campath, Alemtuzamab is just the generic name and they are in the process of trying to get it FDA approved for treating MS under the name Lemtrada”. “No... I don't think that's it, it starts with an A.. Something mab...”. OK I give up, one day you will learn about this medication (I thought to myself).

At that point I told her I was not switching until that medication (Ehem, Campath/Lemtrada) is available because my risk factor as of now is no different (Campath is what my SoCal Neuro thinks would be good for me after Tysabri) so she said “let me go see what Dr. So&So thinks”. She left the office for about 10 to 15 minutes where I took the time to look around. No MS posters, no MS or neurology literature, just s travel magazine and an “MS Cheat Sheet” hanging on the wall... nice. My “MS specialist” needs an MS cheat sheet. Hide that in a drawer, don't post it on the wall for all your MS patients to see! That makes you look way less trustworthy when it comes to your knowledge of MS! She came back in and simply told me that we will just keep going with the Tysabri (since it was clear that she couldn't convince me to get off) and have me come back in for some blood work and see where things are at then. She told me to let them know if any weird symptoms start occurring and I told her “Trust me, I will, I know what the early signs of developing PML are so no worries” and then I left.

So I am good for Tysabri for at least 6 more months. During this time I will be looking for a new neurologist who knows more than me about MS as it SHOULD be... I was so worried about leaving my SoCal Neurologist for this very reason. Oh yeah, I totally forgot to have that abstract sent to that neurologist I saw the other week who had told me that he has "never seen a study showing that Acthar actually works”. CLICK HERE to read that abstract. For someone who is “all about patients continuing their MS education” he sure has some self educating to do! Note how it mentions that a medication like Solu-Medrol may increase your chances of developing PML whereas Acthar doesn't compromise your immune system which mitigates your chances of developing PML. Not to mention they saw patient's EDSS score improve. Anyways, I don't want to come off as a smart ass to them I just want them to know that I know what I am talking about when it comes to MS, I am not just another patient who knows next to nothing and looks up to every neurologist like they are a step down from God... just because you read a few pages on MS in a neurology book and you work at an MS center does not make you a specialist. So please, don’t try to BS me, I am not dumb…

Of course that is just my opinion (I don't trust my life in their hands) but I got the prescription and if I start noticing anything weird (highly unlikely according to the odds and my SoCal Neuro) I will notify them and request an MRI immediately and fly back to see my SoCal Neuro to get his expert advice as to what I should do. So yay, no more stress! If you know of any Neurologists in Colorado that can prescribe Tysabri let me know, thanks!

Sunday, June 29, 2014

My Risk Factor is Not as High as I Thought it Was

After the results of my ELISA test came back positive I was not entirely sure what to make of it. Then, the next day, I got a call from my doctor's office; they left a message (as I missed the call) telling me I needed to discontinue Tysabri and come in to choose another treatment as if I would drop dead immediately upon receiving one more dose. This freaked me out and started me on a coarse of extra-strength stress as I called my old Neurologist's office and emailed him to ask for his opinion. While waiting for a reply I talked to others on Facebook who were JC positive. When I heard about their “levels” I thought to myself “hmmm... my current doctor is telling me I need to stop because my JC levels are  so high  yet these people have higher levels than I and their doctors were not freaking out like mine, weird...” but still I was stressed. What did my level of 2 point something mean? Was it really so serious? What was my PML risk factor now?

Well, let's fast forward to today. Since I have been so fatigued the last few days (most likely do to the stress) and coffee was not doing anything, I decided I was going to take a Nuvigil. I did not like this medication as I felt that in the past it was giving me heart palpitations and every now and then I got the crazy migraine people often complain of. It was not worth the energy at the time so obviously if I was willing to take this medication again (despite the risk) I was getting desperate. I took one 150mg pill at 6:00am and immediately started a log on my phone so I could look back and see how it effected me.

6:00am – Took Nuvigil
6:30am – Part of me wonders if I am starting to get a headache but part of me thinks it's all in my head because I am so anxious about it.
6:42am – Started my morning walk to the market.
7:52am – Got back from my walk to the market.
12:10pm – Still no headache or heart palpitations. I do feel like I have a lot of energy (especially compared to how I normally feel) and I and others have noticed I am talking really fast.

It's about 2:30pm right now and still I feel well. I don't feel like passing out from fatigue, I have no headache, and my chest feels fine. If I had to guess, the fact that I am taking Klonopin (a benzodiazepine) might explain me not getting heart palpitations? Or maybe that horrid feeling in my chest was just my myoclonus which was not even addressed at the time I last took Nuvigil. The headache bit is probably just luck unless all my hydrating last night really made a difference but I can't be sure because I don't know why Nuvigil causes headaches? Either way, I had way more energy this morning, I still feel awake, I have been thinking sharper, I feel good. Which leads me to this next bit.

This morning my mind was racing and everything seemed so sharp as though the cognitive fog had been lifted from my head. So after I got back from my walk this morning I decided to continue my research on the JC virus and how likely I am now (compared to before I was JC positive) to develop PML. All week I have been looking into this and never did I find a single answer. 10 minutes on the laptop today and I had my answer. It's nice to not have 0 visibility in your mind! I came across a page on the actual Tysabri website that told me exactly what I wanted/needed to know. You can find it by clicking  HERE  but what I want to share with you is this simple chart;

This chart looks at the 3 risk factors for developing PML; JC virus exposure, how long you have been on Tysabri, and wether or not you have used immunosuppressant drugs in the past. I also want to clarify what they mean by an immunosuppressant drug. Drugs that are of concern include medications such as  NOVANTRONE, IMURAN, AZASAN, RHEUMATREX, TREXALL, CYTOXAN, CELLCEPT, and MYFORTIC. Drugs that they don't count as immunosuppressive include;  REBIF, COPAXONE, AVONEX, BETASERON, and EXTAVIA. I believe I also read that  most MS treatments like steroids don't really count but don't  quote  me on that.

So, now the fun part; before I was JC positive the chances of me developing PML were less than 1/1000. Now I am JC positive, I am in the "1-24" month range (17), and I have not had any heavy duty immunosuppressant medication in the past. When you do the math I guess it is a little alarming because now (remember I used to have less that a 1/1000 chance of developing PML) my chances of developing PML have skyrocketed all the way to... less than a 1/1000 chance... the same... BUT, if you count my steroid use as an immunosuppressant medication? My chances go all the way from <1/1000 to... 1/1000. Play with the chart, I don't need to get off right now, maybe in a year just to be safe but now? No. It would do me more harm to get off than stay on (thanks to the rebound effect).

So I am no longer worried at all. I will see my neuro wednesday and tell her I am staying on Tysabri. Why she may ask? Well I had a stack of papers of research but I tossed it all in the trash because my argument can now be summed up in one simple chart. I am still willing to take the same risk I was taking from the moment I had my first infusion... so... seriously... Nice try scaring me off Tysabri to start on another therapy your probably pushing for some drug rep. Seriously, I let my BS guard down and you really had me scared, so A for effort! If they still refuse to keep me on Tysabri I will simply say "well, thanks for your time, I am off to find someone who knows what they are doing" and I will find another neurologist who can and will prescribe me Tysabri.  

Maybe I will find another awesome neuro like my California Neurologist? Doubt it but one can hope. If not I will just take the treatment, watch out for warning signs myself, and fly out to see my California Neurologist once a year for an LP (unless I can find someone willing to go that route here) and a consultation on my MRI and overall health. When it's time to switch to a new medication I will do so at his discretion because that is how much I trust him. Now even though everything has so far turned out to be OK, it did open my eyes. How am I going to get through the almost inevitable rebound when I have to stop Tysabri? That day will come and I need to be prepared for the difficult transition onto a new medication. I need to open a savings account and start putting money aside every month so I can have a pile of cash waiting for me for when I have to stop working so that I will not be so dependent on state disability to get me through those few months or so. It really is time to get smart with my money...

Anyways, that's the latest! So I think all is well, worst case scenario, I will have to find another neuro but I have skipped a month of treatment with no problems twice before so I at least have a little over a month to call around and find someone new. I am not worried.

Thursday, June 26, 2014

What Scares me More than the JCV and PML?

I was sitting down reading a self help book (I was curious!) and I started thinking. You know what scares me more than the idea of catching the JC virus and developing PML? It's not death, it's the idea of not moving forward in life; growing stagnant. I really want to progress in this life and something like a health complication can cause time to stand still. My time has stood in place long enough and I desperately feel the need to catch up in life!

I am 24 years old and I look around at all the friends I grew up with; they are all getting married, having kids, graduating college, establishing a stable career, etc. Then I look at myself; I am not even sure what I have that holds any value in this society? Granted, yes, I did get dealt the MS card and it's a card I will for ever hold in my hand but at what point is that no longer an excuse? I moved to Colorado with the intention of starting a new life from scratch; Getting a job, a new car, a place of my own, and so on. Then this JC positive crap comes into play and all of a sudden I am suspended in time once again.

How bad are my levels?”
If I stay on Tysabri will I be monitored closely enough to prevent PML?”
If I get off Tysabri, I will rebound which means I can't get a job now or else in 4 months I am back on disability”
I already have to play the hunting for a decent neurologist game?”
Will life ever stop digging trenches and building bumps in my planned road to success?”

So many questions that have never really crossed my mind are now all I can think about. I have had 17 infusions (I think)... this should not be happening so soon! It has not even been 2 years! Sometimes I think “It's not fair, I am just trying to start a life” but that's such pitiful thinking... There are people out there, many people, who have far worse situations than I do who can make it all happen, so what's my excuse? I'm tired? I'm in pain? I can't find a good doctor? Please! It's rather pathetic if you ask me. I have always been a logical thinker; a problem solver – I took engineering classes for 3 years in hi school! What did I learn back then? If you have a goal then you do what you have to do (no matter how many times you may have to change a factor) to get to that goal. I need to reawaken that mentality so that my efforts to reach my goals in life are like water flowing down a slope of many grooves. Water will always find the path of least resistance to get to the bottom, which in this analogy, represents my goals.

Even when coming up with the logical answer to what I should be doing right now there is still a part of me that is scared. It's natural, we as people fear the unknown and with this new JCV factor popping into my life, there are a hell of a lot more unknowns than I started out with coming to Colorado. I can't see a clear path anymore and since I am a visual person, maybe I need to make a bunch of lists with all my goals and what I need to do to achieve them so that I can physically cross them out and feel like I really am moving forward? Perhaps then I will see things more clearly again and my confidence will be restored because right now I may not be stressed over this turn of events in my health, but I sure as hell feel less confident and more hesitant to move a single piece on the chess bored of my life.

Again I think it is time to post this quote somewhere I can see it everyday to really keep me motivated; “In the end everything will be OK, if it is not OK, then it is not the end”

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