Autonomic and Peripherial neuropathy

Posted by bocarotan @bocarotan, Sep 30, 2021

I have never opened up in a forum before, and still feel uncomfortable doing this one, but I'm going to give it a try. I started having symptoms of neuropathy in 2007 and went from one doctor to another before going to Cleveland Clinic in 2011. At that time, I had a Nerve Conductivity Test (NCT), EMG and Qsart test. the diagnosis was "painful small fiber neuropathy". I was given Nortriptyline and later Gabapentine. Both caused me more problems than I already had. Since then I have gone to three different neurologist and the end result was I have both peripherial neuropathy and autonomic neuropathy with the cause being labeled idiopathic. Over the years, I have gone through the burning, itching, numbness that everyone else has had and in 2017 had a toe amputation due to not realizing that I had an infection. That's a quick background.
My issues now are several: 1 - I really don't like undefined things and the word idiopathic is one of those. I feel there has to be a reason for every condition. 2 - I am starting to lose my balance and walking any distance is a chore. 3 - Late in the day both feet are very painful, my leg muscles twitch all the time, I have no reflex in my ankle or knee and muscle cramps at night wake me up frequently. I typically do not sleep past 3am. 4- I have given up several hobbies due to issues with my hands and photography is now a problem since long walks are a chore.
I'm sure others have similar conditions, but I was hoping to get some feedback on what might be helping. I have been taking alpha-lipoic Acid-600mg, Vitamin D and B-complex since 2011. I think that has helped slow things down some. I've considered going to Mayo, but it is a long drive from Ohio and I'm not sure they can do much more than what has already been done. Hopefully, someone can provide me with positive feedback on that experience. Took all I had to unload this much on strangers, but I'm hoping it pays off.
Thanks to all for reading.

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Hello Bob @bocarotan, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I also have that "idiopathic" diagnosis in front of my small fiber peripheral neuropathy. I shared my story earlier in the Member Neuropathy Journey Stories discussion here - I was diagnosed by a neurologist at Rochester Mayo Clinic when I finally made a decision to seek a specific diagnosis after 20+ years of watching the numbness creep up from my toes to just below the knees. That appointment and no answers to help with the numbness is what brought me to Mayo Clinic Connect to learn what has helped other members.

I love Mayo Clinic but am pretty sure that the Cleveland Clinic is also an excellent health facility for diagnosing conditions. The best thing you can do is educate yourself like you are doing now and learn as much as you can about your condition and treatment options that may help. Here are some of my favorite sites for learning more about neuropathy. You might also find them helpful.

-- Neuropathy Commons:
-- Foundation for Peripheral Neuropathy:
-- Dr. Matthew B. Jensen YouTube channel (easy to understand):

Last but not least, Connect is a great site with a lot of different groups and discussions which can sometimes be a challenge for finding information. Here are some tips on how to use the site:

Do you mind sharing your biggest challenge with your neuropathy? What would help the most if you could just make it go away.

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