thanks alice

November 28, 2010 at 10:13 am

i was thinking a lot about this last night. did anyone mention what the percentages of relapse or any side effects or something negative that might come along with the procedure? i guess it’s hard to believe that it is the cure all. i want to believe but the evil experiences that we have all gone through jsut scares the crap out of me because i just can’t go through it again. i want this gone and never to return.
thanks again for sharing your experience. i went to your blogspt and couldn’t believe how similar our experiences were.

Thanks Alice

February 5, 2010 at 4:36 pm


Thanks for correcting me on your actual condition pre-treatment. Here’s what I meant to convey regarding my condition – If I were to have the HSCT treatment and it fully eradicated the autoimmunity causing active CIDP in my body, the chances are extremely likely that I would continue to have heavy residuals long-term, possibly forever. Things like 0/5 scale strength foot drop, 1 or 2/5 weakness in right quadriceps and hip flexor, 0/5 waekness in the left hand as these are areas shown on multiple NCV/EMG to be areas of severe axonal loss.

I would expect other areas of disability to reverse quite quickly, where the damage is limited to myelin.

However, knowing I could halt progression and disease spikes, and be completely free of treatments will be awesome – then, maybe there will be a medical breakthrough on axon regeneration……..Then, I’ll be back on the snow skis baby……