NEUROLOGY EXPERT FORUM
How do I find experienced neuropathy docs?

How do I find experienced neuropathy docs?

I'm a 41 yr old woman and have been recently diagnosed with small fiber neuropathy (skin biopsy confirmed).  Symptoms started as tingling, numbness, and pain in toes of both feet.  Things seem to be progressing rapidly.  It's now very hard to walk barefoot (feels like rocks under balls of both feet).  Also have intense achy pain in backs of both legs & some heaviness, weakness, tingling in hands & arms.  Have had GI issues for 4-5 years (gall bladder, gastritis, heartbearn) and am wondering if it's related.  Within last few weeks have experienced lots of fatigue, random muscle twitches (neck, arm, leg), weird vibration sensations, & often feels like my hands are shaking but when I look at them they are not.
So far all tests for diabetes & several autoimmune disorders are negative.  Currently checking on Lyme's (tons of exposure to ticks here in Missouri for my work & active outdoor life).  I'm still hopeful that an underlying condition can be identified and treated, but I realize that may not be the case.  Some history of neuropathy in my family, although for both my grandmother and dad it seems related to diabetes/pre-diabetes conditions.
The questions I have right now is this:  how can I locate a neurologist here in Missouri who has dealt with several of these types of cases?  Seems like Washington U. in St. Louis would be a logical place to start, but my online searches so far have been frustrating.  My primary doc is working on this as well, but thought it would be good to put the question out there to an audience with experience.  Thanks for any suggestions.
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Avatar_dr_m_tn
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

I cannot tell you who you should see, but I would recommend that you find a physician in an academic medical center who has training in neuromuscular neurology. These physicians are trained in EMG/NCS and disorders of the nerves and muscles of the peripheral nervous system.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.


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