Axonal peripheral neuropathy: Finally, a diagnosis!

Could you tell me what you did to feel better?

I posted my story here a few years back. Here is a link to it.
https://connect.mayoclinic.org/comment/645606/

My polyneuropathy has gotten to the point where I have orthostatic hypertension , weakness and fatigue. I
That means my blood pressure drops when I stand up and walk and makes me dizzy. Prolonged standing makes me very weak.

I just turned 80. The first time I mentioned a slight tightness in my thighs to a doctor was when I was 67. However, I probably had it before then but attributed it to walking too much. I loved to walk and enjoyed going 4 or 5 miles a day. As the years passed, I noticed I was walking more slowly and couldn't go as far. Most of my walking now is in large stores, with a grocery cart. Once or twice a week, if the weather's okay, I go outside and walk a couple of blocks, using a large, stand-up type walker. This is the irony. The activity I enjoyed most (long walks) is the very activity I can no longer do.

Yes, shopping carts are wonderful. Some days I go into a large store, walk around a while for the exercise, then walk back out to my car with an empty cart.

I have tried to walk around the food stores with an empty shopping cart but for some strange reason, the things I should not eat somehow manage to jump into the shopping cart and I'm forced to go to the check in line. 🙂

I resemble that remark 🙂 It's seems like magic when those non essentials start jumping into the shopping cart.

Neuropathy is diagnosed by emg and nerve conduction test. Small fiber neuropathy is diagnosed by biopsies the doctor takes three.

Did the neurologist tell you what type? My testing Emg/nerve conduction test showed All my autoimmune markers high. I was finally diagnosed with sle (lupus) and sjogrens last year by a rheumatologist. I took pictures of my face every day and sent it to him showing my butterfly rash on my face. The lupus diagnosis was in my chart at the hospital from 2009 but until I took pictures of my face everyday did the rheumatologist believe I had lupus. Sjogrens was diagnosed by a biopsy by an ENT and an eye doctor did two test on my eyes. The biopsy was taking four glands out of my mouth. They were inflamed and tested positive for Sjogrens. Just an fyi if you do the biopsy in your mouth I no longer feel that area in my mouth they take the glands between your lip and down below your teeth.

Hypotension mean it drops low hypertension is high blood pressure. So do you have both or hypotension. I have cardiac autonomic neuropathy my blood pressure goes up and down and I have bradycardia and tachycardia. That’s where the heart beats too slow or too fast. Yes, it moves into your organs they have nerves also. For the diagnosis I had a one month holter monitor test showing the bradycardia and tachycardia along with the tilt table test. They repeated the holter monitor test two years later for one month found out the medication I was put on was not working it was supposed to stop the bradycardia and tachycardia. The medication was metoprolol succinate. Sometimes the bradycardia and tachycardia makes me pass out. I see a cardiologist and a electrophysiologist.
I was diagnosed with autoimmune dysautonomia, small fiber neuropathy (done by biopsy causes the heart problems) autoimmune severe axonal peripheral polyneuropathy. Diagnosed since 2002 now getting where I can’t walk. My feet are dragging. No feeling between my feet and knees along with no feeling between my hands and elbows. I am constantly cutting my fingers and hand when I try to cook.
Diagnosed with SLE aka lupus and sjogrens last year. The rheumatologist started me on IVIG panzyga helps a lot.