Have severe neuropathy don’t know the cause or what to do

Posted by hcolema1 @hcolema1, May 2, 2022

I’ve been dealing with neuropathy for a while, I had the symptoms in 2009, but they went away I was walking as if I was drunk and had ataxia like symptoms. It took a year for me to heal, fast forward two years later my feet,legs, and hands go numb and get worse it starts affecting my vision, urinary flow, my bladder, and my stomach. My doctor checked my a1c while I was dealing with these symptoms and the test all came back normal I’m not diabetic. I notice that I have the inability to do the tandem gait test(walk heel to toe) I always wobble. I don’t know what is causing this I’ve gone to my neurologist they don’t know what to do and my family doctor doesn’t know what to do. I’ve had other doctors say it’s diabetes but my a1c have came up normal since dealing with this. My last a1c was 5.3 I’m scared and I think this thing is killing me. Do diabetics usually have these symptoms and does this sound like diabetes at all? I asked one doctor and she told me diabetics have numbness in hands and feet. I’ve been diagnosed with small fiber neuropathy and I don’t know if this is the cause. Are there any diabetics on this forum that have these issues. I just don’t know where or who to go for help.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Welcome @hcolema1, I know it's difficult knowing what to do when you are in pain and don't have any answers. A lot of the symptoms you describe are similar with those from diabetic neuropathy but you mentioned your A1C being 5.3 which falls in the normal range from what I've read. Mayo Clinic has a list of symptoms for Diabetic Neuropathy here - https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/symptoms-causes/syc-20371580.

It sounds like you have seen a lot of doctors. You also mentioned you have been diagnosed with small fiber neuropathy. Do you mind sharing how you were diagnosed with small fiber neuropathy? Did the neurologist or doctor order a small punch skin biopsy or did you have a nerve conduction test?

REPLY

I had a nerve biopsy’s done and an autonomic test or tilt table test I’ve had and EMG done and a EEG. Are you diabetic?

REPLY
@hcolema1

I had a nerve biopsy’s done and an autonomic test or tilt table test I’ve had and EMG done and a EEG. Are you diabetic?

Jump to this post

I’m not a diabetic but have been told I am pre-diabetic. I’ve had that label for more than 20+ years. I also have been diagnosed with idiopathic small fiber peripheral neuropathy.

REPLY
@hcolema1

I had a nerve biopsy’s done and an autonomic test or tilt table test I’ve had and EMG done and a EEG. Are you diabetic?

Jump to this post

@hcolema1, Here is an information pamphlet from the Foundation for Peripheral Neuropathy on diabetic neuropathy that you might find helpful - https://www.foundationforpn.org/wp-content/uploads/2015/12/FPN-NAFFinalDPNBrochurev6.pdf. They also have a lot of good information that might also be helpful on their website -- https://www.foundationforpn.org/

@howardm, @lyssia, @beetlejeuse, @davelobb12, @dmyerse and @cehunt57 have posted in the following discussions and may have more information or suggestions for you.
-- Has anyone tried treatment for diabetic neuropathy ?: https://connect.mayoclinic.org/discussion/has-anyone-tried-treatment-for-diabetic-neuropathy/
-- Diabetic Neuropathy progressing?: https://connect.mayoclinic.org/discussion/diabetic-neuropathy-progressing/

REPLY
Please sign in or register to post a reply.