September 11, 2023 at 2:21 pm
Ten years ago I had a bad case then diagnosed as Guillain Barre syndrome. Two months in hospital then over a year had limited recovery. Neurogenic bladder and bowel, I walk with a forearm crutch but not far, lots of pain that has been really hard to deal with. I have a Remede implant to pace my breathing due to Central Sleep Apnea (from the GBS) and this year a Spinal Cord Stimulator to help with lower body neuropathy. Which has helped some allowing me to sleep from 3-4 hours broken up 5-7 times. Now I sleep about 5-6.5 hours only interrupted 1-2 times.
Aside from all that my neurologist questions first diagnosis due to many factors way far outside of typical and the severity of residual axonal nerve damage, and a few other issues. This even considering the wide variability of GBS symptoms and residual damages.
So now he has documented active deinervation and a significant difference in nerve conduction studies done 7 months apart. Affecting my entire body most notably my feet, legs and arms. Getting more unstable walking and dropping things more. Writing is very difficult and so on.
I want to confer with the specialist at UT Houston Dr Sheikh who also work with the GBS CIDP Foundation but he is scheduled out through February 2024. My local neurologist sent my test results and his notes to Dr Sheikh.
What would you suggest? 1. Start treatments now? 2. Wait until I can confer with the specialist?
I am concerned of course if I wait too long that the cumulative damage will further disable me and in a way that will not be reversed with any of the treatments. And of course all of the treatments have risks of reactions and side effects.
Any ideas or experiences would be appreciated. Thank you DavidBartoo
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