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mstephen
@mstephen

Posts: 7
Joined: Sep 19, 2017

Autonomic Neuropathy

Posted by @mstephen, Sun, Mar 25 4:36pm

The Mayo Clinic in Phoenix diagnosed me with Autonomic Neuropathy in 2014. I don’t see any reference to that form in any of the information or discussions. I know it effect’s my balance, body temperature variance and possibly thinking. Any one have this diagnosis? Seems to be worsening as I age.

REPLY

Hello @mstephen — I'm tagging @alaskaann, @jeffrow, @steeldove, @2011panc who have all discussed autonomic neuropathy in a previous post. Hopefully they can share their thought and suggestions with you.

Mayo Clinic has information on the diagnosis and treatment for autonomic neuropathy here:
https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/diagnosis-treatment/drc-20369836

John

I am actually going to a cardiac electrophysiologist next Tues. We are looking at that as well as POTS. What are your symptoms if you don't mind me asking. I am going to the AZ Mayo.

@jmmb

I am actually going to a cardiac electrophysiologist next Tues. We are looking at that as well as POTS. What are your symptoms if you don't mind me asking. I am going to the AZ Mayo.

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Hello My Autonomic was diagnosed in 2014 at Mayo Phoenix. In addition to the usual numbness in my feet and to some degree lower legs, I had balance deficits, body temp swings that did not match the normal temperature from my external causes. Ie weather, inside temps, exercise. Probably more if I could detail all of them. They put me on a flat table and stood me up and dropped me back and I was hooked up to sensors attached to my body. I see a cardiologists 2 times a year for. I have 3 stents and history of blockage. I have not drank alcohol for 25 years and quit smoking Dec 83. I developed severe respiratory problems that still remain. Also muscle weakness and stamina difficulty. My vision seemed to fluctuate also. I never had the VA look into this and they never thought to check..I may have been exposed to chemicals while in the military in the 60's.. VA pretends they weren't there though. I will ask miy cardio Doc when I see him next month. Never thought to question him. I should know what POTS means but it slips me. ?? Let me know about your prognoses thanks

Postural Orthostatic Tachycardia Syndrome?

@jmmb

I am actually going to a cardiac electrophysiologist next Tues. We are looking at that as well as POTS. What are your symptoms if you don't mind me asking. I am going to the AZ Mayo.

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@mstephen

The neurologist did tests recently and noted both small fiber peripheral neuropathy and autonomic neuropathy. My main problem is numbness and tingling and burning pain in my feet. The pain got really bad a year ago, so I had a spinal cord stimulator implant in June of last year. It reduced the pain significantly, but certainly not completely. I take morphine sulfate contin, which helps some. I tried every medication for neuropathy but they either did nothing or they had bad side effects. A pain specialist tried a bunch of others with no better results.

I have numbness in my fingers, I have double vision, and some bowel and urinary issues, all of which, some of which or none of which may be related to the neuropathy. It's a challenge when you have multiple things going on.

I hope to see a neuro specialist to try to learn more about it.

Jim

@jmmb

I am actually going to a cardiac electrophysiologist next Tues. We are looking at that as well as POTS. What are your symptoms if you don't mind me asking. I am going to the AZ Mayo.

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Hi were you seen and diagnosed by a cardiac electrophysiologist? Did they do tests on your first visit? I am wondering if I need someone to go with me. I get dizzy easy. Thanks,
Jill

@jmmb

I am actually going to a cardiac electrophysiologist next Tues. We are looking at that as well as POTS. What are your symptoms if you don't mind me asking. I am going to the AZ Mayo.

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I saw a neurologist and Nephrologist. No cardio Dr at all. Only you know. I still get around ok.

Liked by jmmb

@marazion

Postural Orthostatic Tachycardia Syndrome?

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Hi @marazion
Are you looking for discussions about POTS? You might pop over here in the Heart Health group:
– Managing POTS (Postural Orthostatic Tachycardia Syndrome) https://connect.mayoclinic.org/discussion/managing-pots-postural-orthostatic-tachycardia-syndrome/

I was diagnosed with Autonomic Neuropathy more than seven years ago and am finding it to have worsened with the years since. I am 86 now. While it is very troublesome to me I am learning to live with it, somewhat. I have some severe drops in blood pressure and fatigue that lasts through the morning along with feeling as if I might faint. Sometimes accompanied by what my Dr. called foggy brain. Also urinary incontinence and diarrhea that may or may not be attributed to A.N. When I first complained to my doctor of the extreme fatigue he said that is part of the A.N. I do have numbness and tingling in my hand but I assumed it was probably carpel tunnel, but maybe not. With a disorder such as A.N. that can effect so many different areas of our body I do not see my doctor for many of my complaints any more. I try to take it a day at a time. If it seems to be a good day I'm thankful for it and if not I try to accept it and hope for better days soon.

@di3355

I was diagnosed with Autonomic Neuropathy more than seven years ago and am finding it to have worsened with the years since. I am 86 now. While it is very troublesome to me I am learning to live with it, somewhat. I have some severe drops in blood pressure and fatigue that lasts through the morning along with feeling as if I might faint. Sometimes accompanied by what my Dr. called foggy brain. Also urinary incontinence and diarrhea that may or may not be attributed to A.N. When I first complained to my doctor of the extreme fatigue he said that is part of the A.N. I do have numbness and tingling in my hand but I assumed it was probably carpel tunnel, but maybe not. With a disorder such as A.N. that can effect so many different areas of our body I do not see my doctor for many of my complaints any more. I try to take it a day at a time. If it seems to be a good day I'm thankful for it and if not I try to accept it and hope for better days soon.

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Hello @di3355 — Welcome to Connect. I'm glad you found us. I have small fiber PN but only have numbness that affects mostly my feet and ankles. I do have carpal tunnel in my hands but it doesn't bother me too much unless my polymyalgia rheumatica comes out of remission. Then the hands and shoulders cause me more aches and pains.

@di3355 have you found any treatments that give you a little relief?

John

No, I have not really searched for treatments. For a time it seemed as if doctors took autonomic neuropathy as not real. My symptoms involve the GI tract, urinary, intestinal, all of which can be a part of aging and since I'm mid eighties I don't want numerous testing which would involve more pills that could interact with the ones I take for A.Fib and tackacardia and gastric reflux. I prefer to live with what comes but periodic episodes of fatigue lasting for several days are the hardest to deal with. I've been told it's part of A.N. but I would like to know if others deal with this. Often me BP will be very low when the fatigue appears and light headedness, pre syncope come with it. I think I will feel more relieved if I find it is truly part of AN.

@di3355

No, I have not really searched for treatments. For a time it seemed as if doctors took autonomic neuropathy as not real. My symptoms involve the GI tract, urinary, intestinal, all of which can be a part of aging and since I'm mid eighties I don't want numerous testing which would involve more pills that could interact with the ones I take for A.Fib and tackacardia and gastric reflux. I prefer to live with what comes but periodic episodes of fatigue lasting for several days are the hardest to deal with. I've been told it's part of A.N. but I would like to know if others deal with this. Often me BP will be very low when the fatigue appears and light headedness, pre syncope come with it. I think I will feel more relieved if I find it is truly part of AN.

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I was diagnoses with AN in 2014. No real treatment available from VA Docs. My Primary says there is nothing new to treat or alleviate the disease It has become worse as I age. (71) I read from some of the reports that some sort of dementia is not uncommon. I experience that 24/7. Nothing more frustrating.. I saw an aunt start her decline in Alzheimer's many years ago. Cant help making that association. My type 2 went into remission after Bariatric surgery in 7/15 .. I was not diagnosed with type 2 until my 50th birthday. (98)/ The weight loss of 80 lbs has given me a reprieve but the tingling feels like low voltage current in parts of my body. That was noticed in late 70's..

@jobeo1

I am nearing the end of a 12 week protocol to see if treatment will help my condition. Just wondering what experience others have had with extremely high dose steroid 12 week protocol.

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Hello @jobeo1, welcome to Mayo Clinic Connect. While we wait to see if other members with experience with high dose steroid 12 week protocol join the discussion are you able to share a little more about your symptoms? Has your experience with the 12 week protocol shown positive results?

John

I am nearing the end of a 12 week protocol to see if treatment will help my condition. Just wondering what experience others have had with extremely high dose steroid 12 week protocol.

Hello @jobeo1,

I moved your discussion to combine it with this existing discussion on autoimmune neuropathy as I thought it would be beneficial for you to be introduced to the many members who have discussed this condition.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Since autonomic neuropathy is also called autonomic dysfunction or dysautonomia, I’d like to introduce you to a few members who’ve discussed these conditions and may be able to share their experiences with you. Please meet @hayliesmom @emelisseb @bearylynn @neeci @mojoearle @widman @sydneysmom @cehunt57 and @tuckerdoodle.

Some of these discussions might interest you as well:
Autonomic Dysfunction https://connect.mayoclinic.org/discussion/autonomic-dysfunction/
Living with Neuropathy – Welcome to the group https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

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