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My final diagnoses are large fiber neuropathy, small fiber neuropathy and autonomic neuropathy. My neurologist prescribed Mestinon, Neurontin and Alpha-Lipoic Acid. I'm not happy, but at least I can put my questions to bed for now.

She didn't think I had CIDP, but she doesn't specialize in it and may have never seen a case before. I may see a CIDP neurologist some time in the future, but for now I just need to chill.

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Well,on the positive side, the diagnosis could have been a lot worse. At least now you know what you are dealing with. You can move forward into the future without wondering "what do I have." We are all here for whatever support you need!

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Victoria - I'm sorry my memory is failing me at the moment. Are these new diagnoses and are they based on tests done? If so, what sort of testing was done? My next area of inquiry will be with a Dr. to look for small fiber neuropathy. I had some sudomotor testing done when I had my original testing done for POTS, but it came back normal. I still think with my burning feet that SFN is possible and I'd like to get a biopsy done. So does your diagnosis "explain" the POTS symptoms? I mean is the root cause of your dysautonomia ...autonomic neuropathy? And did they say anything about what they think causes that? Congratulations on getting some answers - hope it helps direct treatment and you will be able to get some help. :)

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Are these new diagnoses and are they based on tests done? If so, what sort of testing was done?

Hi Naomi. Yes, my diagnoses are based on nerve conduction testing. I can't decide which is worse, the small or large fiber issues. One would be enough to deal with, but luck of the draw I guess. I think my SFN had progressed long enough that it showed up big and bad on nerve conduction. My neuro made it sound like SFN is usually hard to detect that way. I also think you can have normal QSART test results and still have SFN, so don't give up. Your burning feet seem significant. I started out with shooting pains in the tips of my toes and burning feet. If I were you I'd cut to the chase, save yourself a lot of agony and go for the biopsy if at all possible.

Yes, my diagnosis explains my POTS symptoms. The cause of my dysautonomia IS small fiber neuropathy. My neuro said SFN frequently involves the autonomic nerves.

She said she has no idea what caused my neuropathies and said we may never know. I'm okay with that for now. I was fearful NOT knowing what was happening to me all these years. I'm comforted having answers.

Don't ever give up Naomi. You know your body and you know when something isn't right. I hope you get answers soon.

Hugs.

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Victoria-

Congrats on getting some definitive answers! I pray it leads to more effective treatment. For the record, it's never final :rolleyes:

Hugs-

Julie

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Victoria-

Congrats on getting some definitive answers!

Thanks Julie. It means a lot to me. Knowing what I have is the best medicine ever. Oh, and I'm sure it isn't ever final. A roller coaster. . . .

Hugs to you.

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