Tuesday, April 17, 2012

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Well this is frustrating, I was driving down the road to recovery and I seemed to have ran out of gas leaving be stranded... Doctor won't give me steroids because “it won't effect the overall course of the disease”... … DUH! But it sure will improve my quality of life at the moment! No plasmapheresis, and no alternative treatments because there are no studies that show alternative treatments help MS. “Take your Copaxone and where you are in 6 months is the best you are ever going to get.

“Ahahahahahahaaaa... And I thought my jokes were bad!” 
I am too young to hear that so what to do what to do... Frustrated! ARG!

Symptoms
  • Numb Hands
  • Slight numbness in right foot
  • Pins and Needles in hands
  • Lhermite's Sign in back and arms
  • Loss of fine motor skills in hands
  • Loss of coordination in hands
  • Loss of ability to tell Hot and Cold on skin
  • Some pins and needles in right foot
  • Major Fatigue
  • Weakness
  • Loss of vision
  • Major dizziness/Vertigo
  • Grinding/Clenching teeth in sleep
  • Clonus in legs
  • Possible leg spastisity again
  • Small shooting pains randomly everywhere
  • Horrible Balance
  • Horrible Cognitive Function including Memory Loss

Medication
  • Copaxone
  • Gabapentin
  • Mec;izine
  • Citalopram
  • Baclofen
  • Norco/Percocet (As Needed)
  • Clonazepam
  • B-12
  • Vitamin D
  • Vitamin C
  • Lecithin
  • Calcium
  • Fish, Flaxseed, snd Borage Oil (Omega 3,6,9)

13 comments:

  1. Wow! That is a tough one! I was also told that what symptoms I'm left with will probally be permanent. Certainly NOT what I want to hear. I hate this disease and pray for a cure! Don't give up hope!

    ReplyDelete
  2. Check out www.mynewnormals.com Nicole Lemelle wrote an article on miracle diets. Some of the comments may be helpful to you.

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  3. How about another opinion? Your MS sounds very aggressive and most doctors seem to be pushing for Tysabro or Gilenya in aggressive RRMS patients. Just a thought! Lisa

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  4. Matt are you seeing an MS doc? Im not suprised doc tells you not to get creative with your treatment by way of alternative stuff. Docs often are trained & influenced in a vacuum by the drug & insurance companies etc... to have blinders on when it comes to alternative treatments. YOU dont have those blinders. YOU can & SHOULD research A-L-L your own options & dont be afraid to experiment till you find what works for you REGARDLESS of what ANYONE (esp a doc) sez. I have had years of experience with using alternative treatments on a variety of things, as i didnt have insurance for many years. I can tell you ive seen awesome REAL results using homeopathic / herbs etc... You need to know that alternative remedies can interact badly with some drugs, so you need to do research

    ReplyDelete
  5. Your doctor doesn't know everything and he doesn't have MS. There is no 6-month rule - it may be the results of a study, but then that's only a general rule or an average. I continue to improve after 1 year and so have others.

    I don't know how much steroids you've taken in your life, but they can have harmful effects over a lifetime.

    But you can certainly get a new doctor if you don't agree with this one.

    PS. If you want the most researched, non-fad MS diet and want a guide to lining up your best chances, check out this book:

    http://www.amazon.com/Overcoming-Multiple-Sclerosis-Evidence-Based-Recovery/dp/1742371795/ref=sr_1_sc_1?ie=UTF8&qid=1334774534&sr=8-1-spell

    ReplyDelete
  6. I went eight years after my initial diagnosis before looking at this. The doctors will not recommend anything that has no evidence behind it. They are very scientifically minded and afraid of lawsuits.

    Use them -- get their knowledge. Get a GREAT specialist, but even then get your own knowledge. You are a statistic in a database to them.

    ReplyDelete
  7. Matt, I'm sorry to hear your neurologist is so closed minded. Frankly, that's a very stupid comment about steroids. We all know that it won't effect the overall course of the disease but it will lessen the exacerbation and hopefully allow you to get better faster. Unfortunately, most neuros are that way because as others have said, they are very scientific and don't believe in alternative therapies. That is the only reason I am not on LDN. What my neuro told me when I printed all the information out and presented it to him was that there were no clinical trials with LDN and MS and he refused to prescribe it. But hey, here's these other big pharma drugs and I really think you should be on a DMD. My answer was NO, been there, done that and am still dealing with the lasting side effects today. Is it possible to see another neurologist?

    ReplyDelete
  8. MS CHEOKEE, where are you located?

    OK how to answer all this. I laugh at this neuro because she is so closed minded, I have to prove her wrong now and continue healing after 6 months, I am so tired of all the pharmaceutical BS, I feel like part of a financial situation to help someone i don't know get rich. I will be looking into a new dr. but it won't be easy.

    ReplyDelete
  9. Matt, I'm in Ohio. I know it's difficult to find a good neuro. Believe it or not, mine is one of the best in the area and it's extremely difficult to get in to see him. I know what you mean about helping someone we don't know get rich. Really P's me off. It's almost as though if they can't benefit from our illness, then they don't want to help us. :(

    ReplyDelete
  10. Wish you all the best!!

    http://reikiinmedicine.org/healthful-lifestyle/healing-ms/

    ReplyDelete
  11. "if they can't benefit from our illness they don't want to help us". Well said.........

    Thanks all!

    ReplyDelete
  12. Matt,
    I am finally catching up on your blog entries. Some of my comments are:

    1. Remember, your neurologist WORKS FOR YOU. Just like an accountant, lawyer, or landscaper. If you feel they are not on your side, fire them!

    2. Remember, you are your best advocate when it comes to your own healthcare.

    3. Think "out of the box." Just because something is not backed by FDA approval does not mean it is not beneficial. It just means that no financial benefit can come to a company who sponsored the studies.

    4. Most importantly - something you typed later - "I think what I need to realize is that my life is not over and it is not all about MS." Don't make your life ALL about your disability. We all have some disability but need to get on with other things the best we can.

    ReplyDelete
  13. Sorry for late reply....

    WOW. BEST COMMENT EVER! lol

    "Remember, your neurologist WORKS FOR YOU. Just like an accountant, lawyer, or landscaper. If you feel they are not on your side, fire them!"

    and

    "Just because something is not backed by FDA approval does not mean it is not beneficial. It just means that no financial benefit can come to a company who sponsored the studies."

    lol best words ever, going on Facebook

    ReplyDelete

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