Reply To: nerve healing process

thank you Ann for sharing your rituxin experience.  I have never had physical therapy, I do find standing in one spot very hard and my balance is bad.

I agree –it is very hard to judge ones own progress, especially due to good days–bad days–stress just from having this disease, etc all make it difficult.  I haven’t had an emg/ncv since my rituxin infusions (June).   I’m confused because I keep having strange sensations where I normally had numbness–but I’m not really gaining strength.  I do feel I need another emg/ncv just to rest my mind on what is going on.  If I’m continuing to get slowly worse  as I was with the other treatments then I definitely want to apply for sct.

GH–thank you for responding.  My Dr feels since the sct is still in the clinical trial phase, that it is dangerous and may lead to cancer down the road?? Dr Dyck from Mayo is where i got my second cidp confirmation, when i asked him, his response was something about “taking a nuclear bomb to an anthill” in other words, he felt it too drastic.  I really don’t care if I get cancer “down the road” if it means having a few more good years with full use of my legs.

It is easy for them to sit back and try all these “less invasive” approaches because it is not their life that is going by wasting time in infusion rooms, not being able to do the things they enjoy. Plus not ever really being treatment free.  I wish i had applied for the sct instead of  trying rituxin and been done by now. Now that Ive done the rituxin, I feel I should at least see if it’s going to work, but it’s been 5 months—seems like there should be some significant changes by now if there was going to be.