Who else has Autonomic Neuropathy?

Hi @peggyella -- Hoping you are having a better day today. I'm sure it's not easy dealing with your autonomic neuropathy. I'm not sure if it's helpful or not but I did find an article that might offer some help.

Living with Autonomic Neuropathy
-- https://neuropathyjournal.org/living-with-autonomic-neuropathy/

Also, the following discussion might offer an alternative method to help with associated pain.

Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Hi @peggyella, what you were describing as your history as you were then finally diagnosed with AN sounds so much like my life that I can't believe it! I was being sent from specialist to specialist trying to figure out what the problem was, meanwhile all along they were starting to make me feel like all the symptoms that I was complaining about were all in my head. Except for the 38 times I passed out and was carted off to the ER via ambulance, that's a bit difficult to make up!! At one point my B.P was so low the tech who was trying to get my blood pressure knocked on the window and asked the driver to pull over because he couldn't get a blood pressure on me. At that point I said to him "If I was dead do you really think that I would be talking to you?" so he knocked on the window again and said never mind. before my dx I had my esophagus stretched three times because I complained of food and pills getting caught, I was given medication to "control" my bladder incontinence, which made my already lack of saliva disappear completely. I have bouts where I go from constipation to exploding diarrhea, and the worst part is I don't feel it coming. One morning I woke up in a puddle of my own crap. So now I go to bed in undies that they sell for bladder incontinence which I have to wear anyway when ever I leave my house. I can't get caught not being close to a bathroom when my bladder says it's time. Then there's the temperature regulation business, which apparently my body has forgotten how to do on it's own. When I'm in air conditioning, I have to go outside to warm up, and like now in the winter I dress like I live in Alaska. The worse part of all of this is before I knew what was going on, and I kept passing out, I broke a few bones, but the worse thing was that to conserve oxygen to the main organs my body shunted it away from the brain and so my optic nerve suffered. I completely lost the capillary bed that feeds the optic nerve making it very pale looking. So now I have to be very very careful or else I could loose my vision completely.
So honestly I don't know what's worse, this or the small fiber neuropathy which causes sever pain 24/7. I'm now starting to loose the use of my fingers and hands. I can still type with difficulty, but my handwriting is almost completely illegible. There are honestly a few days that it takes a lot of searching to find reasons to go. Especially since today I just got back from having a cat scan to see if I still had nodules in my lungs which were found by accident last July when I had a cat scan after an accident and I wound up with a fractured sternum. They also found swollen lymph glands all the way down from under my chin down my deck under my left arm and through my left breast. They keep checking those every three months and they're still there. I really wish they would do a biopsy and get it over with already.
Anyway @peggyella I feel your pain and frustration.

Hello @swartzki, Welcome to Connect. There is another discussion with the same name. I'm tagging our moderator @lisalucier to see if we can move you post to the following discussion where you can meet other members with similar symptoms and discussing autonomic neuropathy.

> Groups > Neuropathy > Autonomic Neuropathy
-- https://connect.mayoclinic.org/discussion/autonomic-neuroapthy/

Has your doctor suggested any treatments to help with the symptoms?

Hi Swartzki,

So sorry to hear about your situation. Sadly, I can offer no help. However, you just described my symptom list. Fortunately, I'm retired but this disorder has recently cost me my marriage. My wife was 10 years younger and quite active. I devolved into a complaining, not for sympathy but just to let her know why I was unable to do the things we used to enjoy, miserable person. I am somewhat relieved we divorced because making her unhappy just put more pressure on me. To make matters worse, my beloved Boxer is a 3.5-year post-cancer survivor who is beginning to fade.

How did you get your diagnosis? I have all your symptoms which I have reported to a large number of doctors in various specialty areas but I just get blank stares back. A couple of doctors, one an Internist and another a rheumatologist, gave me lectures on what pain is like and that it doesn't move around from joint to ligament to muscle to bone as I reported.

I have a bit of a dilemma with my neurologist. I was referred to him by a primary care doctor who I saw for 18-20 years. (I've sort of disclosed this history before so I'm sorry I'm repeating it but the backdrop is important in this evolving drama.) 20 years ago, my symptoms began with partial paralysis of my face while doing my job. Symptoms spread down my body over the next few weeks as I recall although I've forgotten the detail. The worst pain settled in my tailbone making sleep or sitting impossible. I saw an orthopedic doc I had self-referred to a year earlier for my first ever back pain. At the time, I was a daily runner and an avid tennis, racketball and handball player. I was in good shape, ate well, and I've never been over my high school weight. The ortho doc referred me to a rheumatologist who diagnosed me with chronic pain and put me on Neurontin and Flexeril. I was able to sleep some at nights but the impact of this pain devastated my professional and personal life. I continued work for 8 years before retiring early due to the pain and fatigue from the medications. I resolved that when I was better rested and had the energy to tackle my pain issues anew I would work to find a way off of my meds.

Upon retirement, I slowly cut back on my meds taking lots of Ibruprofen, using meditation and different PT exercises. However, what I mistook for cold feet at night, requiring layers of blankets and socks, even in summer, gradually revealed itself as pain spreading up my legs. My primary care doc urged me to up my dosage of meds again but I had been having so much stomach and intestinal tract problems over the years, which I attributed to my meds, that I refused. I began searching the Internet for a better understanding of my issues thinking that my current neuropathy and long-standing gut issues were related to long-term Neurontin and Flexeril use. This search intersected with the law-suits regarding Levaquin. I had taken several rounds of Levaquin. I read that it was a serious drug and should only be prescribed if one had something serious like Anthrax, even though it's prescribed much more liberally than this. I was furious that I had never been informed of the possible side effects (there is a long & interesting history of how Levaquin's side effects were withheld from doctors and public but that's another story of big money corruption). Anyway, I did a couple of foolish things. The first was that I completed an online review of my primary care doctor and accused him of being motivated by incentives from big pharma as opposed to the well-being of his patients (Levaquin was not his 1st or 2nd bad call). The second was that I told a concierge doc who happened to be a friend of my primary care doc, that I had signed onto an online suit against JNJ claiming I had neuropathy stemming from Levaquin.

I never spoke with my primary care doc whom I'd seen for 20 years or so again. I do recall seeing an 'oh,oh' look of concern on my concierge doc's face when I mentioned the law-suit. I suppose he might have thought my intention in seeing him was to exploit our friendship so he would support me in my law-suit. This was a class-action suit. I made the cut but probably talked myself out of it when I told the legal aide my primary care doc told me he lost my records around the time of the initial onset of my symptoms. Records indicating prescriptions for Levaquin were still available but I was already on meds at this time, so it was impossible to determine cause and effect.

Anyway, my neurologist whom I was referred to by the primary doc whom I accused of being in bed with big pharma has done questionable things for the last 4 years which poses a dilemma for me in that I'm not sure what I should do. (Hint... this is where the board chimes in) When I initially saw him, he did an in-office conduction test and ruled out large fiber neuropathy. He said that a biopsy would be necessary to diagnose small fiber neuropathy but confirming this would not make a difference in treatment. He recommended Neurontin, Lyrica and Cymbalta, the typical salve for PN. I told him no thanks, I would stay with my reduced dosage of Neurontin and Flexeril and their known side effects while trying to find dietary explanations for the wide-ranging symptoms which varied in intensity.

The neurologist also did some blood work which found I had 10 times the normal level of B6 which can cause PN. I told him repeatedly that my symptoms began 15 years earlier and that the re-emergence of the pins and needles, burning flesh symptoms worsened when I began to reduce my meds 4 years before I saw him, not when I began to take a multi-B complex which was a year before seeing him. I had gone to an expensive holistic practice in Atlanta because of not getting any relief from gastroenterologists for my worsening stomach and intestinal tract distress. They told me I had an intestinal parasite, intestinal bacteria, and virtually no B vitamins. As an aside, what I suspect is going on is that my 'leaky gut' does not allow for the absorption of vitamins and nutrients contributing to some of my health issues like osteopenia which I should not have because of my healthy diet and lifelong rigorous workouts.

So I stopped the supplement, returned to see him about a year later and my B6 was still about 5 Xs normal. I was not taking any supplement with B6. He dismissed me with don't take any B6. He was basically calling me a liar, indicating I was self-sabotaging my health, (what, for the class-action suit?) or that I had Munchausen syndrome. I left in despair not knowing what to do. I kept experimenting with diet because something seemed to make the symptoms worse and then lessen. Anyway, last spring, my symptoms were so serious that I suggested that we proceed with a biopsy because I began to doubt whether my neurologist believed that I had small fiber neuropathy. I felt if tests confirmed what he said he thought I had, then he might explore something beyond Lyrica and Cymbalta. Test results did confirm the SFN diagnosis. Unfortunately, the results were not faxed in until after my appointment was over and I was standing in the checkout line in his office, an open area. The doctor hurries up and tells me it's SFN. I ask what the significance is as I don't recall him telling me before and I never found it in my google searches. He told me it is the worse kind and gave me some extended-release Neurontin. Again, this was an open area, my appointment time had passed, and so I did not get to ask him any additional questions.

After trying the medication for a few days, I felt very bad. It felt like my chest was being crushed and I was depressed. A pharmacy assistant told me that extended-release meds often result in different side effects. I used My Chart to communicate with my doctor's office. I was only allowed a few characters to ask my questions. I ended up sending 5 messages because I had a lot of questions. I don't recall all of them, but one was why he seemed so surprised to find I had SFN when he told me he believed my symptom report from 3 years or so ago. Another was why he was recommending a higher dosage of Neurontin when I had already expressed concerns related to dementia and this drug. I also wanted to know why the more expensive extended-release was recommended instead of around the clock use of Neurontin since I was not working and I could easily do this?

This led to his nurse or PA calling me at 8:30 in the morning after one of my bad nights where I did not fall asleep until about 6 in the morning. She sounded flippant (2nd experienece like this I had with her but then again, I was half-asleep). She told me that the doctor did not have time to read notes but that he could see me in 5 months.

This led me to writing WellStar administrative offices suggesting they increase the number of characters allowed in communicating with a doctor. A Ph.D in WellStar called me and I explained the situation. He said the head of their neurology department would call me to help solve my problem. The Department head did call and asked if I wanted to go to Mayo, have an email Mayo consult or go to Emory which advertises they have a multi-disciplinary team to address PN. I have a Boxer that has lived 3 years longer than expected after amputation of his front leg for cancer and I could not leave him. My wife worked so I took the email consult on the condition that I be allowed to gather reports from other doctors from other disciplines I had seen over the years. They agreed but sent my neurologist's reports to Mayo before I had gotten any other information to them.

My neurologist got his MD from Duke and his residency at Harvard. Of course Mayo did not fault his conclusions based on his testing and notes. This was a huge waste of time. The only thing that might have made a difference would have been reports from other doctors. Mayo did say that I may have Fibromyalgia.

The neurologist's office contacted me and asked if I wanted to come in that week instead of waiting 5 months. I told them I had already made an appointment at Emory. (Sorry for those of you reading this and realizing I've posted this account previously). I saw this Ukranian neurologist at Emory. In attendance was a resident from India and a high school girl getting a leg up. They were doing the needle prick test on my feet and legs when I mentioned Dr. Perlmutter, a neurologist on PBS & the Internet who has theories about 'leaky gut' and SFN. The Ukranian doctor stood up, looked me in the eye and said; "Why don't you just go home and die". Exact words I swear. Also; "Why don't you just make an appointment with Dr. Google." She dismissed the resident and high school girl and told me there was nothing she could do. She was quite cold and made my case seem quite hopeless. She offered no reasoning for her conclusion.

So I went back to my local neurologist out of desperation. I related my Emory experience and he said he was not surprised as if this is typical of what people report. He related that he could still get me an appointment at Mayo. This was the last time I saw him. I returned home and finally found someone to take of my dog so I could make the Mayo appointment. I notified his office, several months ago but never heard from him. Perhaps he was waiting until I was scheduled to see him in November but I had to reschedule and missed it. I also had reservations about seeing him again because I think he lies to me. This doctor is very personable one on one. I like him. He seems to be on my side. But maybe he is protecting the doctor who referred me to him and who may have prescribed Levaquin prior to the onset of all my symptoms. Maybe by indicating that he thought my SFN was due to me taking high levels of B6 protects the referring doctor by ruling out Levaquin as a possible cause.

This neurologist also recommended the trio of drugs already mentioned but after my Emory trip he said he knew they were ineffective. In four years he has not told me what to expect regarding symptoms or disease progression. He indicated that my blurring eyes and burning inner ears were not typical and doing so in a way that I interpreted him to mean I was feigning the symptoms or mistaken. I frequently mentioned my gut issues but not a peep from him in 4 years.

I went to a new primary care physician a few weeks ago who said he read my file and read my neurologist's report that indicated my SFN was due to high levels of B6 and stress. Maybe this is why the Emory neurologist told me to go home and die. Why would the neurologist put this in my file which I cannot see or question but doctors whom I depend on for treatment read? I explained several times that my SFN symptoms started in 4/99. This information should be in numerous doctor's reports if he was really interested in making a diagnosis. As for his diagnosis that the varying intensity of my symptoms is due to stress, I find this negligent, sloppy, and wrong. I am a psychologist. The only doctor in my entire life who has asked me about stress was my heart doctor and he just asked if there was any stressful event in my life preceding my attack. But this is not a formal assessment by any means. All the other doctors I've seen have always been in too much of a hurry to ask open ended questions. My neurologist never asked this question but he put it in his notes to round out his explanation for my reported symptoms. If other doctors read this and think that I am an attention-seeking, self-injuring patient interested in monetary damages from big pharma who has been openly critical of a doctor whom they all regard as a friend, then I'm screwed.

Thus, my question to the group is, should I trust this doctor? In 4 years he has not told me one thing about SFN. He told me in my initial visit he believed my reportage of symptoms and suspected I had SFN but he never suggested anything beyond Neurontin, Lyrica and Cymbalta. He believed my high level of B6 was the explanation of my PN despite me repeatedly telling him that my records would show this was not the case. His notes probably cost me an arduous drive and a copay as well as the affront by the Emory doctor.

My apologies for repeatedly posting parts of my frustration and history before. In a way, this is a bit cathartic in that my experience with doctors has gone down-hill since I began to ween myself from my meds and look for other explanations for 20 years of pain.

As a psychologist, I try to keep my difficulties in perspective, because regardless of how costly my health issues have been to my peronsal and professional life, I am blessed because I do not have monetary worries nor do I have to work with this challenge like Mr. Swartski. I'm also aware of how many kids have it so much worse right from day 1 on this planet.

Lastly, I thank this board for bringing me in contact with other persons like Mr. Swartski. His list of symptoms covers many of mine which is at least comforting in that I have not been able to get a single doc to look at my issues in a comprehensive manner. I wish I had something to offer you, Mr. Swartski other than keep trying as there are many knowledgeable posters on this board.

If anyone has any ideas about what I should do with my relationship with my neurologist who is personable but who has not given me any information about this disorder, I would be appreciative. Based on what he put in his notes about me, is he a friend or foe? I did send his office the link of the Harvard professor who is in the forefront of research in PN and his staff replied several weeks later that they could not open the link (this may be a policy issue) but that if I could let them know what tests she recommends that my doctor has not done, then we could talk about it. Why am I paying a copay? I'm like the rest of you, seeking something that is probably just not there but it would be nice to know if this is actually the case or whether I'm just asking the wrong people. Obviously I screwed up in being negative towards a doctor and joining a class action suit but 20 years is a lot of pain.

I'm scared. I'm 54, and I have autonomic neuropathy. I'm going completely bald. I have horrible headaches, vision problems, trouble swallowing, digestion issues, urinary issues, tightness in my chest, and worst of all, horrendous fatigue that resembles the flu. I'm still working because I have no choice. Is there anyone else out there with this debilitating condition that can give me any hope for long term survival?

A friend of mine was in a horrible auto accident 15 years ago. The accident was not her fault & she was in a company car. She hired a lawyer and after a 5 year legal battle with her company and workman's comp, she finally got disability. This is an arduous road but perhaps it may relieve your financial worries.

I had a 'heart attack' which resulted in hospitalization. A cardiologist later diagnosed it as something else. Just this Sunday I had the same painful experience. If I didn't have my dog to worry about I would have gone to the hospital. My flesh was burning from head to foot, my stomach and gut have been a mess for weeks, and my chest was very tight with the feeling like I was being squeezed in both armpits. The horrendous fatigue at times has been so painful that the only thing I could do was lay down but in doing so the whole body ache was so great I could not sleep. So how did you get a diagnosis of autonomic neuropathy? Was there some kind of testing involved? Although labeling does not lead to treatment if a remedy does not exist, it is at least a first step. I have the swallowing issues, the cut tongue experience, the dry mouth, numbing of lips and mouth, burning eyes, blurred vision coming and going, semi-tumescence off and on all day, and never-ending gut issues ranging from nausea, cramping, etc.

I hope you find relief soon and share it with the board. Has anyone else been diagnosed with autonomic neuropathy?

@jager5210 - I'm sure this question is redundant, but have you been tested for MS and/or other autoimmune diseases? What type of doctors have you seen? Have you been seen by a rheumatologist?

Hi Iceblue,

That's another thing about the neurologist I've seen for 4 years. He has done a lot of testing but he's never told me what the tests are for. I recognize Lyme tests by name but not the other tests.

I saw a rheumatologist 20 years ago when I had unremitting tailbone pain in addition to the other symptoms which were waxing and waning at that time but my focus was on my tailbone. I'll never forget when he told me in a 'disgusted' way, 'oh, you have chronic pain' like I chose to have it. He put me on Neurontin and Flexeril. I never saw him again because of his attitude and it was a long drive to his office. My 'friendly' primary care doc refilled my prescriptions for years and never once asked how things were going with the meds.

When I had my 'heart attack' 3.5 years ago, initial blood work indicated this but a catheterization procedure did not confirm, it resulted in a referral to a cardiologist. By this time, I was seeing my concierge doc who referred me to a PA because all the cardiologists were booked for months. She looked at testing which had been done (this by my neurologist) and said; "Oh, I see you have Lupus". My mother had systemic Lupus and RA. I knew there was something wrong like lack of confirming evidence since my neurologist did not communicate this with me, but in the meantime, I self-referred myself to a rheumatologist to see if there was something there that could explain all my pain with migrating, waxing and waning symptoms etc. I made the mistake of explaining to this Indian doctor that my primary care doc of 18-20 years must have thought that I was a hypochondriac because when he got ill and I saw his partner for a while before transferring to the concierge doc, he more or less communicated this. The Indian rheumatologist wanted to do more blood work but I asked if he could not get all the testing done recently by my neurologist. His staff said they could not access it and then he quickly explained that my joints seemed normal and that the mind can create these pain experiences.

Long story short, I finally saw a cardiologist who explained he thought my heart event was not an attack but a stress-related event. I know my pain was worsening and my concierge doctor friend was getting frustrated so I switched to a new primary care doc. I don't recall what prompted my self-referral to the Indian doctor's colleague, a Philippine rheumatologist, but I made the appointment and had to 'verbally fight' to get testing done. This doctor wanted to know why I was there. He told me my symptoms were not in his specialty area. He kept interrupting me. He told me I wouldn't take any of his drugs if he found anything. (No telling what was in all my doctor's notes by this time) After a good 30 minutes of verbal jousting, he consented to do a full workup. He withdrew a lot of blood. When I returned for the results conference, I waited while the entire waiting room emptied. After 40 minutes, I was directed to a body width room, a closet of sorts. I was not given a reason as to why the doctor was delayed. I waited another 40 minutes and then asked for a refund of my copay.

My new concierge doc referred me to a 'specialist' of sorts who was supposed to be able to help me with my osteopenia (I got a compression fracture picking up my dog..something I used to do all the time when he was 15lbs heavier with 4 legs). I did get the Philippine doc to fax my results to this doctor who looked at it and said he didn't know what it means but that I should see someone because it looked significant.
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So after my biopsy with my neurologist confirmed I had SFN which resulted in a brief conference in his waiting room, and the subsequent e-consult with Mayo and then a self-referral to Emory who advertised they took a multi-disciplinary approach to the diagnosis and treatment of PN, I was told; "Why don't you just go home and die" by the Ukranian neurologist. I asked if I should see their gastroenterologist or rheumatologist and she said no. There was no explanation involved at all.

I concluded that there must be some really bad stuff in my file for a doctor to respond in this way. As mentioned, I worked with doctors all my professional life and this was just beyond the pale. So this is where I'm at. I've had a lot of testing done but I have no idea what for and what the results imply. I'm more or less resigned to the fact that this is my fate and I pray I outlive my dog so that I can take care of him. After he's gone, I'll do the intelligent thing... having explored options from many viewpoints. I'm 72. Stuff happens and we leave the stage. I think I've exhausted all the medical resources I'm going to be able to use. I did google 'blackballing or black listing' by doctors and it's a real thing. Somehow I've worked my way onto this list.

I am a 54 year old terrified female. I have autonomic neuropathy. I am ashamed to say that I believe mine was caused from alcohol, but the five neurologists I have seen says I did not drink enough to cause this. I am not diabetic. I have had a number of traumas. The conditioned has worsened in the two years since I stopped drinking. I am almost bald. I have headaches, vision problems, trouble swallowing, GI and urinary problems, numbness, burning, and unbearable fatigue. I need to desperately to hear from someone who is living with this. None of the doctors have offered any treatments. They say I can live but I will wish that I would die. (Really, that's what a doctor told me.) I am losing hope, and I think of suicide often because I'm afraid I can't keep working and taking care of myself. If I just knew of anyone who lived with this condition long term, I think I could be more hopeful.

Sorry, guys. I did not see where people had responded to my earlier post. Thank you.