Reply To: Hello, I'm new here and looking for a little help

May 23, 2013 at 7:58 pm

Sorry for the delayed response. I’m kind of in a holding pattern, as my symptoms fluctuate so much week to week that they’ve decided to hold off on the IVIG for a while. They still won’t call it CIDP or MMN specifically because of the lack of electrodiagnostic evidence and my EXCRUTIATINGLY slow progression that can barely be called progression (I’m happy for it, trust me, but it makes diagnosing harder I guess).

CG – I don’t think there has been any testing to vasculitis specifically. I have normal ESR and CRP, but I’ve had one ANA screen come up positive and a few others normal. I have high IL-6 and IL-2. Plus the other weird stuff I mentioned above.I completely hear you about putting a name on it. I was afraid of MND (still am a little) but after my EMGs, blood work, and rate of progression rule it out, all I keep saying is “fine, its not ALS…then what the $%#@ is it?”

bny806 – Very glad to hear IVIG worked so well for you! Do they think the medical procedure triggered some osrt of crazy immune response that IVIG calmed down? Its so weird how these GBS/CIDP/MG symptoms blend together. My neuro told me how much gray there is with these things.

Do you guys believe at all in dietary changes? Should I try something less intense like prednisone if we don’t do IVIG now? I feel like I’m losing my mind a bit.