My MS Symptoms Are So Sensitive!

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It’s really frustrating right now because everything is so sensitive. I see some improvement and then something causes me to back track. Unfortunately my motor skills are suffering the most right now and I hate that because at least with pins and needles or numbness you can still function OK but when your hands go out it’s hard to take care of business! When your legs grow weak it’s hard to hide the fact that your ill! Of course I can’t help thinking about my desire to have money again, a job, to attack school full blast, etc so these back tracks are extra frustrating because not only am I taking a step away from good health but I am taking a step away from my goals in life and then the stress from that causes my health to take another step back and so the vicious circle begins.

The Prednisone is helping but not immensely… As I mentioned above, my hands are suffering the most. The coordination in my fingers is rather lacking and sometimes they tremor but mostly they feel stiff and slow. I have learned to type decently with them like this, in fact, I am starting to forget what it was like to type smoothly and brake free at all which is good for my sanity but probably bad for other things…

Playing piano is not so much fun either, it feels so technical now instead of feeling like a feeling. I can’t time the notes properly anymore and I can’t just think about the sound I want to produce and produce it. I really hope this get’s better because I am starting to worry that it might not and I will be overcome with regret if I loose the function in my hands because I had so much artistic potential that I never fully used.

I am starting to think about more aggressive Multiple Sclerosis treatments… Would it be a good idea to at least try Tysabri for a year to buy me some more time? So that I could have a year to work my butt off, save money, finish as much school as possible, etc? Because I just don’t know how I am ever going to move forward at this rate because it’s been over a year and I am in no better position now then I was to begin with except that I have more knowledge. If I could use a year to start setting up my life it might not be as hard to finish setting up my life and get me to the point where I have a decent job that I can use to get me disability when I need it. Who knows… I am eager to see some new doctors and see what they think and how they think they should treat me because I am desperate for some change.

18 Responses to My MS Symptoms Are So Sensitive!

  1. Anonyms says:

    Gilenya has changed my life as far as MS disease modifying drugs go. I will never go back to injections ever. Gilenya has its own risks, just the same as Tysabri or any other drug does. I recommend you strongly consider it. I get the medication for free through Gilenya's financial assistance program, even though I have insurance (specialty drugs are $250/month). All it takes is a prescription from your doctor.

    The risks sound scary but are rare. I am also in my 20's and at this point I figure, what do I have to lose? I have not had a single exacerbation since I started it and that is what I have gained.

  2. Matt Allen G says:

    Wow, I think I will start looking more into that. I know my kaiser doctor wanted me to try but we will see about what ever new doctor I get! I am so sick of my hands being so useless, I NEED THEM!

  3. Anonyms says:

    I still get the regular MS annoyances but I have not been hit hard with being unable to walk or complete loss of being able to use my hands/arms.
    And thankfully no major vision issues.
    And spasms are still there.

    Just no full on exacerbations.
    Compared to Rebif, it's a night and day difference.

  4. Matt Allen G says:

    Yeah well compared to what I go through as often as I do, that would be great since the normal MS annoyances are pretty much here to stay! Haha!

  5. JAX says:

    I would definitely give it a try. Even if it will only buy you some time to get your life back on track. It may buy you a lot of time to get out there. Especially when you hear positive feedback like above!

  6. Matt Allen G says:

    I know its just scary! Haha…

  7. Anonyms says:

    They make you go through some pretests before you can start Gilenya. You have an eye exam, EKG, and blood work.
    My neurologist felt that it was mostly overkill, but they do it to follow the guidelines.
    After 3 months they do follow up blood work and eye exam.
    Its all very straight forward. If you have any questions about my experience, ask away. I would gladly answer any questions about it. I know most of the ins and outs of how its supposed to work.
    I can tell ya now, I have had zero side effects from the medication.
    I am about to hit the 6 month mark.

    I would recommend this to anyone that is having trouble finding a working DMD.

  8. Matt Allen G says:

    I prefer lots of check ups so THAT I wouldn't mind. That is the main reason I didn't want to take it, Kaiser is not on top of their game and I don't need liver failure because THEY failed to do a simple test you know?

    How long did it take for you to notice it's effect? I know with Copaxone it was pretty much a trust thing for me, I had to assume it was doing something because I couldn't see any effects at all…

  9. I've been on Gilenya most of this last year and I felt much better almost immediately. This may partly have been as a result of stopping Rebif injections or because Gilenya is fab. My only downside has been a bouncing white blood cell count. I started off low, dipped below the acceptable count for the trial I'm on (0.6 neutrophils) rose to a mighty 0.7 and dipped again, rose up etc. Apparently this is normal on Gilenya. Good luck with getting it. Here in the UK I may not e eligible after I finish the trial extension. I will not go back on injections. Gilenya is my only hope.

  10. Matt Allen G says:

    Uh-Oh, I don't like the white blood count thing but maybe it won't be an issue, good to know though! Hopefully you can get it after the trial, how long is your trial?

  11. Anonyms says:

    Matt, I switched from Rebif to Gilenya and it had an immediate change on my life. Rebif was the worst thing I ever put in my body.
    I regained my ability to walk and function. Night and day difference.

  12. Matt Allen G says:

    Wow. I am getting kind of eager to try it lol!

  13. Anonymous says:

    I am very perplexed by people saying that they feel much better using Gilenya… I guess if you are using Avonex, Rebif or Betaseron you would have less side effects but switching DMD's shouldn't have any effect on primary MS symptoms. All of the DMD's are PREVENTATIVE, they don't repair existing damage. I've been taking Copaxone for over three years now and while I hate the shots more and more with each passing day I do not harbor any illusions that switching to another DMD is going to repair any of the permanent damage I already have. I will probably investigate switching to Gilenya myself but I'll wait just a little while longer, I'm not so brave or desperate enough to be a guinea pig.

  14. Matt Allen G says:

    I am getting desperate since my fine motor skill loss has lasted so long, I NEE MY HANDS! Haha!

  15. Anonymous says:

    Matt,
    I ran across your youtube video kind of by accident. I was looking for some medical information. I clicked your video. It was some 12 minutes long.
    I married with a wife. I'm 45 years old. I collect global masks, some 150 masks now. I've traveled to 89 countries. I'm a 3rd degree black belt in Taekwondo, and started working on a black in kung fu. I've taken lots of risky vacations to Hezbollah and Al Qaeda territories. I've been in jungles, including Papua New Guinea by myself, at least initially, collecting masks.
    And Matt, I thought I was brave. I really did.
    And a lot of people made those kinds of comments to me. But, I have to say, you're much, much braver than I am. You're a real imspiration. And I have to say, you've really effected my life, and it was just by accident. There aren't a lot of people like you. There simply aren't. You're a hell of a human being.
    Merry Christmas and Happy New Year! I wish you all the best. Sincerely, Eric

  16. Matt Allen G says:

    Thanks man, that means a lot. Bravery come in all different shapes and sizes, I along with many other with MS might have to be brave to survive but I can honestly say I would never travel to those places lol! Thanks for the comment though, I appreciate it!

  17. Matt, I'm right there with you man. Recently diagnosed with MS myself I too am suffering with the same symptoms. I'm due to start Avonex this Wednesday when the nurse gets here. I like the idea of once a week injections. Hope everything works out for you

  18. I was never on Avonex, Rebif was the closest to it. I know if I didn't take ibuprofen right before I injected I got the flu like symptoms so I would be sure to do that! Thanks! Good luck!

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