Hey there, I also repeated my NCV/EMG a few weeks ago at the UCSF and it came back normal again after 2 years. BUT...my ACE serum levels came back high which points at Sarcoidosis, which can cause small fiber neuropathy (undetectable on EMG/NCV). I am having some tests done to confirm Sarcoidosis as my diagnosis so that we may start treatment.

Are you doing anything else besides EMG/NCV...blood tests for specific immune diseases, skin biopsy to check for small fiber neuropathy etc.? Do you have any other health issues besides neuropathy? That could point to a diagnosis/tests.

Keep going, something will eventually come back positive.

Hi chamade. I am actually going to the neuro tomorrow and will find out some more results on blood work and MRI's. I also want to ask about a skin biopsy. Woke up this morning hurting so bad. At least I know though, everyone here knows how I feel. I hate this.

Hope...good luck with your appointment tomorrow. I hope you get some answers soon!

Would burning skin pain fall under SFN? Does anyone know if SFN would be seen in hereditary neuropathy as well?

Hi, Did you get the results of your DNA blood testing for CMT yet? I "think" you were waiting for them or maybe I am wrong. Thanks...

Hope...how did your appointment go? Maybe I missed it on another thread. I'll go check!

Kitt....I'm still waiting on the bloody appointment to see the CMT specialist who will arrange for the testing.....It's been 3 months! Grrrrr!

I hate this feeling too. Also I hate "not to be me anymore". I'm tired, in pain and agony most of the time.
How can I stop these feelings?

Hi lynxgal. I hope you get in soon to arrange for the DNA blood testing. After that, it does take awhile for the results as I'm sure you know. Good luck

[QUOTE=lynxgal;478177]Hope...how did your appointment go? Maybe I missed it on another thread. I'll go check!

Hi lynxgal, sorry, I have been off the computer for a few days. Well, I went to the neurologist on Monday, and so far all tests are normal. EMG, blood work, normal. The MRI's are definitely showing some back problems in the neck and lumbar area, but supposedly no nerve compression according to the results.

The next step? The neurologist is sending me to yet another neurologist for a further opinion and possible skin punch biopsy test....

Ouch I hurt this morning.....

Hi Hope, Sorry you are hurting (gentle hugs)

Did they indicate what exactly they saw on the MRI? Good luck with the 2nd or 3rd or ? opinion.

I'm heading off to see my 4th neurologist is 2 years. At least I finally have the appointment for the genetic testing!

Quite a lot of wear and tear in the lumbar and cervical regions. Some disk bulges, arthritis, loss of disk height etc. But in their opinion, nothing can be seen compressing any nerves that may be causing my pain. Still, I know my back is doing some kind of number on me. The pain, especially in the lumbar area gets so bad sometimes, I can hardly walk.

Oh, I just wanted to add that I'm wishing you the best of luck with the genetic testing....let us know how your making out!