Neuropathy - anyone?

[Kelleyhome]

Has anyone developed peripheral neuropathy as part of their autonomic symptoms? I'm waiting to see the autonomic specialist, but my feet have been hurting off and on for years and now hurt all of the time. They are better at night since I take Gabapentin prior to bed, but during the day they really hurt.  If you have been diagnosed, what is your treatment? 

Thank you!

[gackedo]

I have neuropathy in my feet for which I was originally prescribed Lyrica. Gradually I increased my dose to 350 mg a day in divided doses my my feet where still so painful. When I was prescribed Cybalta I finally got some relief. Before I go to bed at night I also use a topical essential oil cream that I get from DoTERRA called Deep Blue.  

[Kelleyhome]

How and who diagnosed the neuropathy? I have an appointment with the autonomic specialist, but not until next February and I am worried that it will continue to get worse. Thank you!

[gummi]

my mom is the diagnosed party, but her autonomic guy tested her. he's a cardiologist who specializes in dysautonomia. he did a foot-specific version of a Q-sart test.

my mother has small fiber neuropathy which is most easily tested and recognized in the feet. it can be difficult to pin down the 'type' of neuropathy. physicians have mentioned diabetes, one annoying family doc said it was anxiety (moved on from her!). others weren't sure if it was small fiber or large fiber polyneuropathy...

basically, it may not be the most straightforward diagnosis.

she was advised to take all the above meds at various times--gaba, lyrica and cymbalta. she wanted to try less medication and more natural stuff. she's very sensitive to medications and dealt with all manner of side effects from the previous 3. 

instead the autonomic doctor prescribed metanx, a vitamin/activated folate combo capsule. she is unable to tolerate it at the moment and is pursuing further diagnosis next month at the mayo clinic, but as far as i understand, the gaba, lyrica, cymbalta are all meds which mask and block the symptoms/signals of neuropathy. metanx is supposed to allow the small fibers (the nervous system's C fibers) to re-generate, hopefully 'curing' the neuropathy in total and helping some of the other areas which are affected by the body's small fibers. depending on the case it may take some time--months of two capsules per day.

this won't apply to every case, certainly, but it's something to keep in mind if and when you are formally diagnosed.

 

[jvherenow]

I have small fiber neuropathy and POTS. the SFN was diagnosed by a skin biopsy. But, my first biopsy (left ankle) was negative. The second biopsy 6 months later was mildly positive in right ankle but pathetically positive in the right thigh...makes no sense but that's what I got. 

I am hoping to give subcutaneous IgG a try when I see the neuropathy group at Mass General in January. Other than that, my integrative MD has been a huge help. I started taking alpha lipoic acid and the tingling went away! I still have erythromelalgia though, but that is getting a bit better now that the weather is cooling off. I was taking pyridostigmine but I'm improved enough from all the integrative MD supplements that I've stopped that. It did help a lot. Baclofen (a muscle relaxant that doesn't cloud my thinking) is now super helpful.

Good luck!

[Clb75]

I have a separate disorder that causes small and large fiber neuropathy. I was diagnosed by a neurologist who did a nerve conduction test and emg muscle test. These do not catch small fiber neuropathy though, you have to do other tests like a qsart or biopsy. I’m on ivig and gabapentin. There are so many different causes of neuropathy so the treatment really depends on the cause. If your autonomic speacialist does not test for this, it may be helpful to find a neurologist before your February appointment.