Hi Coach,

Sorry to hear you have not been able to determine the underlying cause of your polyneuropathy and your neuropathy is getting worse. I can relate! I also have small nerve fiber polyneuropathy, confirmed by biopsy, CRPS and Erythromelalgia. Many, many tests later, I am where you are, idiopathic. My Neurologist, Rheumatologist and even a consult with a Hematologist have been unable to find an underlying disease/condition for the polyneuropathy. We know the CRPS was the result of surgery. I also failed the sweat test portion of Autonomic System Testing which helped to make this diagnosis.

The Neurologist who I see told me that she sees others in her practice who have idiopathic small nerve fiber polyneuropathy and it's common to have Erythromelalgia along with it. Disappointed and frustrated, right now, what she can offer is pain management and periodic blood tests to see if anything changes. Some patients eventually find the cause but not all she cautioned. This Doc has been researching these conditions for several years and this is all we have right now, I have tough pain in both feet, up to knees and pain in each hand, up to my elbow. One or all of my conditions are spreading with the top of my foot and front of toes now involved.

My eye Doc questions that I may have Sjogrens but I think I had testing with my Rheumatologist last year that was normal but I think I've heard that you can still have it with normal tests. Over the counter products as well as RX toothpaste for dry mouth and Restasis and plugs for my dry eyes are what I'be tried. Nothing has helped as of yet but the plugs are relatively new.

Coach, I'm sorry you have this diagnosis and I hope you get some answers
soon. Please write if I can help in any way. Folks here will help too!

Deb

Yes I have OA just about everywhere (football). Yes I do have ISFN and only resently did the sunburn sensations all over my body start. It used to be stinging, prickly and itchy sensations only and that came and went. Now it all seems to want to stay. I take 2400mg of gabapentin, 10mg of Nortriptyline and 100mg of lamotrigine. I don't think it is doing much for me. I think that when I was symptom free, the cause(idiopathic) had relented and I was feeling great. However, I got to feeling sick again and was besieged by all these symptoms again. I wonder if they will ever subside again. It feels like it wants to stick around this time.

I looked into that condition, but I don't notice any signs of granulomas and tests show that my organs are functioning well. I wish you the best. By the way, on this thread, a person left you a message with questions.

I too am sorry that you have to suffer like that and hope you will find some underlying cause that you can treat. It is amazing how similar and yet different many of our symtoms are. No wonder it is so hard to diagnose. Perhaps we are suffering from the same condition, but it is manifesting itself in a differnt way.

I always hear that my symptoms are non-specific and don't fit any one known disease. As one of my many doctors put it, "There are more things we don't know than we do and, therefore, we try to eliminate the relatively few known diseases and then treat symptomatically when there is no identifialble cause." As you are well aware, it is very frustrating because, in the meantime, many of us continue to get worse. Not knowing how it will progress, I think, is the scariest part.

Hi CoachT, this sounds very similar to what has happened to Matt (my other half). At first, the consultants were pretty sure that he had Sjogrens, but then after 2 weeks of intensive testing, they concluded that although he had some Sjogrens symptoms, he didnt have others and the nearest diagnosis they came up with based on the results of an ankle biopsy, was Neurosarcoidosis although again, they have told him that it is still not classically that but that is the nearest positive diagnosis. Like yourself, Matt's has been very tricky to diagnose and also started with positive ANA's in the blood, etc an they have told him he is a pretty unusual and rare case. He has peripheral neuropathy affecting all of his right side and unfortunately has had 10months of chemo too but with no improvement. It is difficult when a disease is not straightforward isnt it! I wish you all the best of luck. X

It certainly is difficult to say the least. I have not been doing well and I am struggling to get through the days. The reality is that all I have been doing is sleeping 15 hours a day to escape the horrific pain and sensations that are all over me and then I cry over half the time I am awake. I cry until I am so exhausted that I will be able to sleep again. I know this is no way to live and that I need to find help, but I don't think there is any. I don't know how to deal with this. I think I am in shock.

I am so sorry. It does sound autoimmune in nature.

Did someone mention Sjogrens Syndrome? I have this and I have found that many doctors don't fully know or understand it. If you go to the SS website, you'll see it can influence many parts of the body and small fiber neuropathy is somewhat common.

I have Sj. Syn. and have dry mouth, dry eyes, body aches, fatigue and neuropathy. I also have Atypical Trigeminal Neuralgia that came after some questionable dental work.

I had the nerve conduction test and did ok, but my neuro indicated I might need the test for the small fiber neuropathy down the road. The small fiber neuropathy (which is something I know very little about), again, is relatively common with Sj. Syndrome.