Idiopathic Generalized Neuropathy & Rapid Raynaud's Escalation
 

Hello, I hope I am posting to the correct board, but I would like to run this by people familiar with autoimmune disorders. Apologies if I go on too long. You can skip to the end as you see fit. BACKGROUND: I started having trouble with movement, coordination, and paresthesia (hands, arms, and legs) in 2010. I was diagnosed with idiopathic generalized neuropathy in early 2011, with abnormal NC, EMG, and EP studies but consistently normal blood work. About a year later I started experiencing a chronic CRUSHING type of pain I had never experienced before, mostly in my hands and forearms but also in my upper arms, shoulders and thighs. At the same time I started experiencing bouts of a rug burn feeling in big patches pretty much anywhere body. The right side of my face became chronically numb, and my veins became very visible--and sometimes inflamed--everywhere. My balance was poor, and I became weak, having trouble rising from a chair and climbing stairs. I went to a new neuro for a second opinion about this time, and he said that an underlying autoimmune disease, probably lupus, was causing my neuropathy that sooner or later it would show up in my blood work. He said there wasn’t much he could do except prescribe meds for pain and periodically run blood tests. Then in early 2013, for the first time, I got a couple Raynaud’s attacks in my hands. Other autoimmune-ish symptoms were emerging as well. I took matters into my own hands and went to a rheumatologist. She mentioned Sjogren’s as a possibility and did a more complete blood workup, but still it all came back normal. (FWIW, she said she is seeing more and more patients like me: people with generalized idiopathic neuropathy and symptoms of systemic disease but clear blood work. I’m sure that describes a few people on these boards as well!)

She diagnosed me with fibromyalgia, and that’s where I stand now. But in the last month or so I’ve been getting Raynaud’s attacks super easily. I don’t even have to be cold—just somewhat stressed. (And FWIW I get cold ridiculously easily.) I am getting attacks a couple times a week, and my fingers go corpse white and are slow to come back under warm water. Even when not in Raynaud’s mode, my hands look awful. My palms are pale and mottled, and the skin feels tight. When I ball my hands into a loose fist, you can see all my bones and veins and the skin is super shiny. No doctor has mentioned scleroderma to me, but the escalation of my chronic hand issues is making me wonder.

QUESTIONS: I am trying to understand whether fibromyalgia can explain everything I’m experiencing, or whether, as my neuro says, there is an autoimmune disease lurking under the radar. I’ve read that Primary Raynaud’s is not indicative of autoimmune disease per se, but that Secondary Raynaud’s is or may be. When someone with idiopathic generalized neuropathy and numerous symptoms of autoimmune disease develops Raynaud’s in her late forties, is that inherently another symptom of autoimmune disease? And is a sudden, dramatic escalation of Raynaud’s attacks also suggestive of progressive autoimmune disease? It has been a year and three months since my last autoimmune blood work up, though my rheumatologist didn’t bother to order a new work up when I saw her last this fall. Should I push harder for a new work up? Will my blood work ever solve the ongoing mystery? Or does the dx “fibromyalgia” explain everything that has been happening?

I’m not sure what I should do. Just sit back or push these doctors . . . Many thanks for listening. ☺

Welcome divingdeep. :Wave-Hello:

I hope you can get to the bottom of it all. I can see where you would wonder about scleroderma.

And--
 

--you might want to discuss on our neuropathy board (if you haven't found that already):

http://neurotalk.psychcentral.com/forum20.html

There are numerous autoimmune diseases that can result in neuropathy, and not all of them are the anti-nuclear antibody types that rheumatologists usually treat. Some of them involve other autoantibodies, to peripheral nerve or to other tissues, and the neuropathy results from secondary compressive mechanisms.

See:

http://neuromuscular.wustl.edu/nother/autoantibody.html

Hi,
You should have your Rheumy order the AVISE SLE+Connective tissue 2.0 test, this is the ost accurate test for diagnosing Lupus and other auto immune diseases. They start with the two ANA tests, IF and Elisa if you pass these then it goes to the second tier of tests Anti-ds DNA, anti-smith, etc
My sensory neuropathy has be tied to SLE Lupus, along with neurolical problems and blurred vision. The test be comes with it's own cooler for the lab to sen the sample. Since I was a cash patient the whole test was marked down from $1,600 to $90! I got tree positive, one antibody that attacks the kidneys. If there is any chance you have SLE Lupus you need to get started on Hydroxycloirquine as soon as possible. This will hopefully start reversing the damage.