Quote:
Originally Posted by deb b
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
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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.