Reply To: Are my symptons CIDP related or other

August 10, 2020 at 9:44 pm


It’s been a few weeks and between doctor’s offices and messed up labs and home
Infusion companies- I guess I’m getting closer to ivig…

In the meantime, I’ve seen an ENT as my neurologist recommended. Fortunately they ruled out Meniueres Disease. The ent sent me for a cdp test, which test balance between your vestibular, vision and somatasensory system.

The physical therapist that test me, told me that my vision and vestibular (inner ear system) were impaired and functioning below age level average. She explained that my brain, inner ear and vision do not always communicate properly and that causes my brain to have a momentary lose of body in space which is what is causing my “drop” attacks.

She couldn’t say what caused the deficits, but did say that autoimmune could be cause if it’s related the nerve damage.

She gave me a tip and I’ve been practicing it since Friday. She said for me to pick a fixed point when I’m walking to focus on, and that should help decrease the drop attacks. Oddly enough- it works. Yesterday and Today were the first days I haven’t fallen in months.

I’m very cautiously optimistic that with ivig and balance therapy, I might be able to walk normally again…

Hope everyone is staying well and safe.