since posting this more problems...

Late winter , fluctuating but progressive weakness esp legs, falls w/ injury {now dealing w/ fractured knee and neck/head injurys]
more neuro SX: intense burning, stabbing pain esp head; spasms, fasciculations
cold/heat intolerance; severe muscle aches, low grade fever w/ sweats/chills--feel like I'm burning up now yet my feet are cold. Bladder & sex dysfunctions. Chest pain w/ heart palps.
Persisting nausea w/ frequent vomiting & digestive issues --weight loss from not eating. and other problems-- inc. TBI (traumatic brain injury) affects.

are these related, what is wrong??? seems every trauma causes more problems, esp Pain ,which has been my big complaint, but now progressive weakness -- and fear of more falls--is scary.

my neuro still feels IG is THE treatmt for immune mediated polyneuropathys. my DX: CIDP [sensory variant] has been disputed by some Drs. When I was hospitalized after bad fall in April -- one neuro said after exam "you can't have CIDP"
more tests (i don't remember all [blame TBi] but after nerve testing was told i didn't have PN.
later, relayed this to DR B, my long time neuro who used to work at this local center, first wanted to know who did tests, that he'd would be contacting, then said "you have small fiber neuropathy." (first time hearing this--little info I've gleaned since did seem to address my situation, of pain & Sx that mimic MS, difficult to DX, skin punch biopsy best.

can anyone share more about small fiber neuropathy? I wasn't able to question DR B more in that brief phone call. he did reiterate his feelings (mostly negative) about this facility which my experiences confirm, and reason for long drive, out of state to see Dr B.

during that hospitalization,
another neuro there focused on NeuroMuscular disorders--myopathy; muscle biopsy was done--a BIG regret -- i wasn't expecting to have 3 inch incision in my thigh nor persisting spreading pain & Sx that look now like RSD.
Before results known, this neuro quit. problems getting records and more bad experiences at this center I wish i'd never been taken to by ambulance.
I did refuse to go after more recent fall (concern that my neck fractured outweighed by these experiences. later did have xrays which showed injury but no fracture) Vertigo , problem I've never had before also factor; along w/ weakness & pain may be causing more falls. (differnt than drop attacks)

my head is pounding now; writing is difficult , trying to address so many issues. Perhaps too much here, but what's going on....

I have appt w/ neuromuscular specialists at bigger city hospital --in July;
hope my records, test results available by then. Dr B said IF myopathy, treatmt IVIG...


IVIG treatmts stopped in April--some insurance issue I'm trying to understand & resolve
but wonder if worth another fight. past 6yrs problems getting & maintaining treatmt, IVIG has NOT been as hoped or expected. But seems did get worse when treatmts stopped in past .

I'm far worse now but don't know if NOT getting IG reason since most Sx & problems addressed began while I was getting IVIg. Perhaps 4 mths was not long enough to know. or I'm in that % of patients who don't respond to IG. other options??? suggestions???

many questions--hoping for answers--I feel overwhelmed as well as increasingly dysfunctional and depressed.

I was also recently informed that Botox, which was most promising treatmt, for migraines headaches/pain [ dx: cervical dystonia] denied. Hope DR will appeal; he feels IVIG is priority, but I feel all these issues need attention & resolve...asap
sorry for such a long rambling post.... hope makes sense