Hey guys, I know I'm a newbie, but I came here as a place to stay sane, and hope you guys can help steer me in the right direction.
I had a second opinion today at Duke from the really highly rated neurologist from the crappy one I saw in Charleston a few weeks ago. She tells me that My 4 lesions are all confined to my spine, and that, as a man with only spine lesions, I am at the highest probability for disability.
She then tell me that my disease has been around since 2004 when I had an onset of ON, but my Dr's all missed the further relapses, as all of them could be chalked up to muscle strains, and I was a full time attorney/part time construction worker for my dad at the time. She further said that she felt my disease is kind of benign, even though I have lost feeling in 2/3 of my body, and she tells "it could be worse", because half the people she sees cant walk, and I'm huge and really strong, though numb and tripping over my feet half the time. I guess I could count my blessings.
She told me I should pick from a CRAB drug and hope for the best, and if one didn't work, another might, but not to hope for more than a 1/3 reduction in relapses, if I haven't passed that point, and I f my disability got severe, I should look into tysabri or campath due to their side effects.
She told me she thinks I'm still RR, though she wasn't 100% sure, and the line is kind of blurry. She told me ccsvi was not worth spending money on, as she has had experiences with several patients, and no long term gains. She further told me that she thought hsct treatment was extreme and only justified, if ever, by having more rapid onset of disability than I have. She said the risk was just too high, even with folks having some recovery, the future risk was too high, AND CHEMO WAS A DRASTIC STEP. This meeting actually made me lean really heavily towards Hsct treatment, though I probably cant afford it. When the only answer is "it hasn't been approved yet, even with good results" it seems like a cop out to me, who is convinced I am on the verge of switching to a progressive form of the disease.
She seems really competent and as empathetic as a person who does't think what I have is really serious can be, but what do I do for me?
Please give me info on what drug to start on, and please convince me that hsct is not the answer, as I dont want to jump in over my head. Any other advice is also welcome, as I feel really lost right now, and want what is best for me in handling my disease.
Thanks so much for reading this long post, but It is really important for me to make the right decision, and I want as much info as I can get.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane
Who is John Galt?