Hello everyone:

Well I've quietly been developing numbness and tingling in my hands and up my forearms over the last year or so, maybe 18 months. Haven't brought it up here because I didn't think it was related, and the initial diagnosis both by my regular doc and a rhuematologist (this after negative tests for nerve damage) was something called Raynaud's Phenomenon, a circulatory condition resulting in sensitivity to cold.

This week I was back at the neurologist for another round of nerve conduction studies, and he found damage. He's calling it "Polyneuropathy" and it seems to involve the sensory - touch - nerves and not the motor nerves. I had blood drawn and numerous tests will be done on it.

I'd be interested to hear from anyone in the group who might have expeienced similar symptoms. The numbness is quite pronounced and I have trouble with small motions - buttoning, using a TV remote, turning pages, etc. The tingling is especially bothersome and it rarely goes away. It feels as though my hands and forearms are continually halfway to coming back from falling asleep.

Of greater worry is that one of the tests being done is something for a little goodie called "Anti HU antibodies", which arise when the body is mistakenly attacking nerves instead of a malignant tumor. The neurologist opined that at first glance my problems may have arisen back when my body was fighting the SCC in 2009. But the more I read of these Anti-HU fellows, the more I'm concerned that, should I prove to have them in my blood, they may be indicative of a tumor in my lungs. And as we all know, sometimes this can happen a few years after SCC. Add to that that for the last... oh... 6 months or so I've had a dry cough that ebbs and flows.

Thanks for listening.

(OH and since I didn't have chemo, the neuropathy was not a function of that treatment, as I'm aware it can be)

I have neuropathy the past 4 years, basically from chemo, but underlying medical conditions could have been accelerated, like from diabetes, illness, being bed ridden, other medications. I did the nerve conduction tests with the cattle shock prod, and what did I learn, I have nerve damage lol. I could have told them that. I have been trying to find out how I was paralyzed from my waist down for 10 months, and still with some loss of movemrnt. Could have been weakness, but my torso, arms, had no paralysis, but hands have the neuropathy. I think losing 110lbs in several weeks from cachexia or cancer wasting syndrome, has something to do with it. I looked into Gallium Barre Syndrome, which could have been caused by a stomach virus or respiratory infection, both which I had, and immune system starts attacking the nerves, but I don't think I'll ever find out. I saw a FDA announcement, which I posted here, that certain antibiotics can cause permanent neuropathy. There are also 20 different types of neuropathy.

I hope you find answers. Good luck.

I just looked into the polyneuropsthy, and it is related to gallium barre syndrome or is a subset. It's rare, but the flu shot can cause it.

Neuropathies, neuralgias, etc., are all related to late effects of treatment. Radiation and/or chemo is the most likely cause and since you did not receive chemo, radiation could be the culprit. Curious if your neck hurts and if you have had a spinal MRI.

Radiation damage can mimick about any neuromuscular disorder. Reynaud's-like symptoms and even thoracic outlet syndrome symptoms can be caused by scar tissue around the base of the neck which would cause many of the issues you are experiencing. In my case mostly my small finger and ring finger goes numb for hours at a time on both hands. Even muscle weakness in the blood veins can cause similar symptoms. The main problems are vaso-restriction for veins traveling through any scarred areas; likewise arteries. In addition nerve damage from the radiation prevents or restricts current flow.

Paul and Uptown: thank you both for your kind and very intelligent posts. Up - yes, I had a cervical MRI and it was negative. My neck doesn't particularly hurt, just a little stiff and sore and (most likely) permanently numb on the side where I had the dissection.

Paul: I do get flu shots, and have also read about Guillain-Barre.

I have faith in my medicos and I'm figuring I can handle anything. Would really rather not have to handle lung cancer of course. So I guess anything less would be a blessing! I hope to know more this coming week when the blood work comes back.

I hoped Uptown would add, he is very knowledgeable. Good luck.

Good luck with your tests David. If you can find a provider and your insurance covers it you might want to consider ART (Active Release Technique). You can google and find the website and from there find a provider. They work on nerves mostly and muscles. Great relief from the numbness, tingling and pain.

Also consider neck massage working mostly on the scalenes. They are muscles around the brachial plexus nerve bundle and are known to cause referred pain head to toe.

Uptown - great suggestions, thanks a million. I'll definitely look those things up. You're knowledgeable and a personal inspiration!

I have minor neuropathy in the soles of my feet and in my hands from chemo. My Oncologist keeps telling me that it should go away but I think he's blowing smoke. My Radiation Oncologist told me that she's had cases where acupuncture worked to relieve it and I have done a web search and found that there is a B vitamin combination (similar to what David2 mentions on a different post), from several sources, that has worked for some people. I've ordered it and will post my results

Good luck, Lefty. I haven't been back to the acupuncturist since my last post but I'm going on Weds. However I did get my thyroid results back and I'm slightly high on the rapid TSH. The doc therefore upped my synthroid from 100mcg to... drumroll please!... 112 mcg. I can't imagine this will make much of a difference and look forward to discussing it with him. If he ever gets back in the office.

Thanks, all.

David, please let us know how you make out with the accupuncture apt. Not many have done this but from a couple that have Ive heard good results.



PS.... My thyroid meds just went from 50 to 75.