--that IvIg won't help people with axonal degeneration; certainly it has been used 'off-label' for that at certain centers (notably the Jack Miller Center in Chicago and Cornell-Weill in New York) when there is documentable evidence of anti-nerve antibodies (not all of which attack myelin).

Have you had full antibody testing, along the lines of Dr. Latov's/Quest's listing:

http://www.questdiagnostics.com/test...ripheralNeurop

When there is documentable evidence of autoantibody activity some specialists will go to bat against the insurance companies on this (I've seen the Cornell doctors do it). It does take strong advocacy, as the insurance companies are not in the business of saying 'yes', of course.

I often add to my replies "I hope someone who knows more responds!" This is why. Many of us are very knowledgeable about our condition. A few of us are very knowledgeable about the conditions of others. Glenn is one of those few.

I am a 32 y/o physician with post-flu vaccine neuropathy - my sx are burning all over the body -- mainly in arms and legs for last 10 months. My extensive neuro workup has been negative, including skin biopsy for SFN.
I am not sure what to do next. I am on Neurontin 1200 mg per day, Magnesium taurate 400, vit b12/folate and vit d.

I could not tolerate the other pain meds the neurologists tried (lyrica, cymbalta etc.). I really can't be on those kind of meds b/c i have to function at work also. I am very sensitive to most medications.
The neurologist said we could do a 6 month trial of IVIG just to see.. i am not sure if this is the right course.. any thoughts?
I am open to alternative therapies.
thank you

tarheel

if your neuro can get IVIG approved for your neuropathy, do it

IVIG is the most "natural" treatment that exists today...potential benefits far outweigh any risks

symptomatic tx will NOT reboot your immune system...so why not try IVIG for 6 months?

the sooner you start IVIG, the better the prognosis...I would call your neuro right now and tell him to get you started asap....you have nothing to lose by trying it