Hi Emma and Kristin
Appreciate your input and have made some notes on the T-3 and will talk to my doc on the 29th. Sure is interesting how may cases are misdiagnosed and how everyone reacts differently to the various treatments and medications. Until last week, I was not aware that some react differently to different name brands of IVIG. Sure do learn a lot of things here which is great.
Thanks to all
Thanks for your encouragement with the tysabri. It is cutting edge therapy and I go for infussion #4 on the 29th. Have seen no respose from the first three, so doc is going to give me a PE on Tuesday and has also indicated he will give me one IVIG infusion with the tysabri on the 29th. This to is a rather unique treatment protocal. He has tried everything I’ve seen posted on this site and have researched on the net, so I am confident he is up to date on what’s going on with this disease, but was taken aback when he said CIDP does not cause pain. I plan to share with him the responses I have had from others in our family and ask him what his basis for that comment is. As to the risk for brain damage, some days I don’t think I would notice a difference!! Its one of those risk reward things, and as my response to other therapies lessens, one tends to reconsider things. I feel great about the decision and am hoping the reward will be there.
Hope this finds you well.
Even I can weigh in on this one. I have CIDP. I have pain. The pain worsened for me during remission. I have had spike and jab pains, aching of muscles,
residual inflammation pain. And many other pains associated with muscle and tendon imbalances from the condition. My knee cap hurt when I go up steps.
etc. on and on. I believe the multifocal motor neuropathy has less or no pain, just weakness.