SRS the Dr. just called about my Brain MRI

Discussion in 'On Topic' started by Maestro Nobones, Jun 28, 2005.

  1. Maestro Nobones

    Maestro Nobones Great Job! - GLAD DADS CREW

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    background, I was diagnosed with MS (multiple sclerosis) last october. went on the new treatment Tysabri for a few months until it was pulled from the market by the FDA. Been on no treatment for the last few months, just keeping myself fit and eating well to try to keep my body strong. I've had one attack since I got off Tysabri that effected my vision and hearing, but those symptoms are pretty much gone now.

    I had my brain MRI as a checkup yesterday, and my Dr. got the results today. I had an appt. scheduled for august 3rd, but they called me just now to tell me that things look worse than they expected, and that I should come in friday to discuss getting on a new treatment.

    This is bad, because A) I thought I was doing well and B) because Tysabri was pulled from the market because people who were taking a combination of Tysabri and Avonex (betaseron) were dying from a very rare CNS infection. I was hoping that Tysabri would come back soon, because it's been shown to be the safest of all the MS treatment (when used alone) with the lowest occurance of side effects.

    I really don't want to have to deal with those side effects, or having to inject myself once a week. Tysabri was a once a month infusion that I went in and got an IV for. I fucking hate needles, the prospect of shooting myself up once a week makes me shudder. Plus the host of side effects are shitty for all the alternative (immuno-modifier) treatments range from generally shitty to downright fucked. Even better, by going on one of the OTHER treatments I risk my ability to later go back on Tysabri, since the combination of Tysabri and an immuno-modifier is what causes PML (the disease that killed the people in the research groups).

    So, no matter how good I feel right now, no matter how much stronger I feel, and no matter that I'm in the best shape of my life right now, my goddamn immune system won't stop eating my central nervous system.

    yay. :hsd:
     
  2. Darketernal

    Darketernal Watch: Aria The Origination =)

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    Make a list of the things you want to do and arranged before you are totally mangled. Look, it maby the shittiest advice you have received yet, but if i where you i would try vitamin cocktails, and Mc Donalds. Vitamins are said to give some protective properties, i would focus on vitamins that re-build the nerve system. And fats (lipoids) surround the nerve tissue for protection , not to the point that you get extravagant fat, but trying to slow down this shit as best as possible.
     
  3. Maestro Nobones

    Maestro Nobones Great Job! - GLAD DADS CREW

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    that's what I been doing. :sadwavey:
     
  4. Darketernal

    Darketernal Watch: Aria The Origination =)

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    Another wild shot in the blue , ask your docter to subscribe immunosuppressors. Its the stuff they usually use with donor organs, but since you have got nothing to lose i would ask for them. Maby it would reduce the anti-bodies reaction on trying to destroy your body.
     
  5. Spiritus

    Spiritus Active Member

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    You should take omega 3-6-9 omega fatty acids, lecithin, co-enzyme q-10, alpha lipotic acid...

    these have been proven to help protect cells from free radicals and are antioxidants.

    they also give energy to the mitochondria and prolong life, while fighting many many diseases.

    if anything it will give you more energy which you will need.

    cannabis has been shown to form fatty substances around brain cells, maybe it could help the CNS.

    that's all im good for. good luck man, I hate hearing shit like this.
     
  6. IspitHotFire

    IspitHotFire 3 Greatest rappers of all time ? Dylan, Dylan, and

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    whenever i read threads like this is motivates me to make myself a better person

    good luck man.
     
  7. Maestro Nobones

    Maestro Nobones Great Job! - GLAD DADS CREW

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    these are the self-treatments I've been using thus far.

    It looks like the dr. is gonna put on on Copaxone (a non interferon immuno-modulator) until Tysabri comes back.
     
  8. Darketernal

    Darketernal Watch: Aria The Origination =)

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    I will pray for you :love: much love and support wished from Darketernal.
     
  9. gourmizz

    gourmizz New Member

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    shit man... i wish i could help but i dont know any advice to give, keep fighting though.

    good luck :hs:
     
  10. Bleed

    Bleed New Member

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    best of luck man. i dont even know what to say in this thread except good luck. :hug:
     

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