Who else has Autonomic Neuropathy?

When you say "early stage of AN," does that mean it will definitely progress?

Hi Jim,

Thanks for the post. I'm in year 20. You post an even more complete list of my symptoms except I don't have the back of the tongue issue but I do have the vibrations or tremor like issues, sometimes over my entire body. I was positive for the skin biopsy. Did your team use other test to make this more comprehensive diagnosis? Do you mind sharing what meds have worked for you?

Also, I eat but have to eat after I eat as I rarely feel full. I am not overweight. However, I do get heartburn in the evenings, nausea in the mornings, and cramping during the day. I've expressed many times over the last year that I feel like I'm disintegrating particularly in my spine. I was 5'11" since high school and 5'7" when last measured. I may be less than this now. Every now and then I feel 'normal' and my optimism returns and I think I'm going to kick this thing. And then I'm back at square one. It's a very frustrating and tiring disorder.

@jager5210,

Are you saying you have lived with autonomic neuropathy for 20 years? I remember your saying your first symptom was numbness in the side of your face-that was my first symptom also, and it happened about a year and a half ago. Again, I wish I could give you some suggestions. I do sometimes take 25 mg of tramadol. It lasts all day, and it helps with my profound depression. It is the only thing that helps at all. I've tried amytriptolene, lyrica, cymbalta, gabapentin, and all kinds of anti-depressants. For sleep, I use an OTC product called Midnight. I tried medical marijuana, but it was very expensive and made me very anxious. I think I probably could have tried different kinds, but I gave up on it. As a woman who had cascading blonde hair, I can say the hair loss is the worst followed by the fatigue and stomach pain. I take Metamucil daily, and it works for digestion. Have you tried any of the drugs I mentioned? Also, I know there are drugs to help with the stomach motility. Recently, I have experienced profound muscle loss in my triceps and forearms. My arms look that an an 80-year old. I'm here for you.

Thanks for the reply. I've been on Neurontin and Flexeril for 20 years. I did try Tramodal & a couple of other meds when I was in acute pain in back, leg and hip area about 13 years ago. I stopped when I got up in the middle of the night and fell on my face. Too strong for me. Cymbalta & Lyrica have been regularly recommended but I thought my digestive issues were related to what I was taking as opposed to SFN-AN and I was reluctant to try anything else.

My initial symptom started in 4/99 with semi-paralysis on the left side of my face with some slurring of words. I don't recall the progression, but it was quick, days or weeks before I was experiencing pins and needles all over my body, burning flesh, partial paralysis of my legs and then the incredible pain in my tailbone. Nothing diminished the tailbone pain. I had 3 epidurals, 2 guided. The doc & I had attended the same language school in the service and as a favor, I asked him to give me as much of the 'cortisone' (or whatever they were injecting into me) as was possible plus a bit more. I was ready for ablation, anything.
The Neurontin & Flexeril finally allowed me to get a few hours of sleep and gradually the pins and needles, tearing flesh, paralysis dissipated but would return if I moved the wrong way. I had returned to a Harvard trained orthopedic doc who I had seen the year before this began as a result of my first bout of low back pain. At that time he told me I had a slight narrowing of L3, L4 I believe but when I returned the following year he said there as a marked change which he could not explain. He said it could be the result of a bacterial or viral infection or an allergy. He diagnosed degenerative disc disorder. Again, daily runner, avid tennis player, etc. with a healthy diet. I did PT, chiro, massage, acupuncture and thought I had tried everything and that this was my lot in life. However, my life long digestive issues were worsening prior to this. I had numerous GI explorations over the years but they were all negative. No one ever suggested there was a connection between my gut and other issues. About 5-6 years ago, my digestive issues certainly worsened. I was on Creon for over a year although a gastro doc in the same group said the gastro doc who prescribed this shouldn't have...who knows? And 12-13 years ago when I began cutting back on my meds to see if I had some improvement in my stomach and gut functioning, the PN became more constant and recognizable. But my bouts with migrating, waxing and waning pain in feet, thighs, hip area, and lower back that seems to go from joint, to ligament, to muscle to bone have been omnipresent even when on my full meds for the full 20 years. I also had the left armpit chest pain which I've put on every medical questionnaire for 20 years. The burning in the center of my eyes and the rapid, intermittent focus issues became a problem about 5 years ago. I've had tinnitus for a long time but the burning in my ear canal for about 5 years. For about 2 years I've had the feeling of blood rushing to my penis despite lack of mental or physical stimulaton. So, is this SFN-AN or are all these separate issues with distinct causes? I don't know and I've not had a doc look at it in a comprehensive or holistic manner. I know I've left a lot out but your questions are helping me get all this out so I can copy, paste for my records. I really hate spending time on this.

@swartzki I'm pretty sure it will progress. In the meantime I try to treat the symptoms.

I am 72 and was diagnosed AN at Mayo Phoenix4-5 years ago. I never heard of this condition. I was diagnosed with type 2 diabetes on my 50th birthday.. My sugars were managed with out insulin. I took other meds and my VA Doc kept an eye on it. I had Bariatric surgery in 2015. I lost 80 lbs and have a much different died and A1C is staying just below 6.. I stopped diabetic meds within 2 weeks. Not necessary. BUT the neuropathy has no specific treatment that I know of. I take the max dose of Gabapentin. 6 per day and pain meds. I cant find a medical treatment that does anything to make this go into remission like my diabetes . Thanks

@swartzki

I'm not sure if neuropathy has an effect on life expectancy. Probably some of the symptoms could hasten death, by a fall or a heart attack or inability to swallow, or some other vital function.
Jim

Thanks, Jim. You mentioned you saw a "swallow therapist." Were you unable to swallow? May I ask what that doctor did for you?

I'VE BEEN DIAGNOSED WITH ONE OF THE THREE TYPES OF PERIPHERAL NEUROPATHY, NAMELY, AUTONOMIC. I'VE READ THAT PEOPLE WITH THIS CONDITION USUALLY HAVE A LIFE EXPECTANCY OF ONLY ABOUT 5 TO 1O YEARS FROM THEIR DIAGNOSIS. BUT, THE DIAGNOSIS BASICALLY SEEMS TO BE BASED ON SYMPTOMS. IS ANYONE FAMILIAR WITH TREATMENT, IF ANY, FOR THIS CONDITION?

@juanito, Mayo Clinic has some information that provides some insight into the treatment of autonomic neuropathy on the page below. It mentions treating the underlying disease and managing the symptoms.

Autonomic neuropathy - Diagnosis & treatment: https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/diagnosis-treatment/drc-20369836

Did your doctor or neurologist give you a specific diagnosis or any underlying cause?