Autonomic Neuropathy

Posted by mstephen @mstephen, Mar 25, 2018

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.

@peggyella

Sensory PERIPHERAL neuropathy (SPN):

20+/- yrs. R/L feet
1+ yr. R/L hands
I am not diabetic
Nothing on the internet addresses this
18 mos. R foot swollen, red, more pain., skin changes color light brown/texture dry/leathery. Not vascular. Misdiagnosed as stress fracture. Anyone have this? Neurologist said PN. The nerves are so damaged that some of them are dying.

Recently diagnosed with AUTONOMIC neuropathy (AN) as well:

Been seeing SEPARATE SPECIALISTS for various organ dysfunction until recently when I was Dx with AN. Symptoms not new, just blamed on different/unrelated causes.

GI, UPPER ~ MULTIPLE:
3 decades,Progressed from REFLUX to hiatal hernia, gastropathy, stenosis of the duodenum,10+ yrs. ago gastroparesis. Coughed 24/7 for 10 mos. until Jan. 2017, fundoplication (stomach wrap). Stopped the cough but not the excessive saliva. Progressively worse problems swallowing sev. yrs. Gastroenterologist said only help is gastric pacemaker. No thanks!

BLADDER:
25 yrs. progressively worsening until now intermittent days of >30 bladder spasms/day. Anti-spasm bladder Rx hardly helps now. Moffit recommends a machine in my bladder. No thanks. Local urologist says permanent cath. Previous Dx = neurogenic bladder. Now – AN

SYNCOPE:
2 yrs. blacked out and hit my head several x /day = wheelchair + helmet = Mayo 8/16 after I passed out through a glass-top table. Due to severe insomnia, Mayo Clinic said “micro-sleep.” Stopped the last 2 yrs. Now experiencing intermittent syncope (“near-fainting”). 40-50 times in 1 day last week. Syncope = AN

DIZZINESS/IMBALANCE/STAGGERING:
24/7 with standing/walking. Previous Dx ataxia. Now = AN.

GI, LOWER:
2 yrs. intermittent BOWEL incontinence 2-10 x/d for days, then 0 for days/wks./mos. Previous Dx = pinched L5 + Sciatica R/L sides. Now = AN

SEVERE INSOMNIA

TREATMENT OPTION(s):
My neurologist said my only option is medical marijuana. I’m waiting on the State to renew my license. Mayo Clinic told me not to use it because “it’s a narcotic and you don’t need it” to deal with chronic pain. Really? I have 30 other chronic diseases/conditions.

ANYONE ELSE HAVE SIMILAR SYMPTOMS? WHAT HELPED? If the AN affects my heart, it could be fatal. If the PN and swollen foot worsens, I could be an amputee. The nerves are dying.

Thank you. Peggy 💖😊

Jump to this post

Good morning Peggy,
I just want you to know I'll be praying for you. 🕊

REPLY

Sensory PERIPHERAL neuropathy (SPN):

20+/- yrs. R/L feet
1+ yr. R/L hands
I am not diabetic
Nothing on the internet addresses this
18 mos. R foot swollen, red, more pain., skin changes color light brown/texture dry/leathery. Not vascular. Misdiagnosed as stress fracture. Anyone have this? Neurologist said PN. The nerves are so damaged that some of them are dying.

Recently diagnosed with AUTONOMIC neuropathy (AN) as well:

Been seeing SEPARATE SPECIALISTS for various organ dysfunction until recently when I was Dx with AN. Symptoms not new, just blamed on different/unrelated causes.

GI, UPPER ~ MULTIPLE:
3 decades,Progressed from REFLUX to hiatal hernia, gastropathy, stenosis of the duodenum,10+ yrs. ago gastroparesis. Coughed 24/7 for 10 mos. until Jan. 2017, fundoplication (stomach wrap). Stopped the cough but not the excessive saliva. Progressively worse problems swallowing sev. yrs. Gastroenterologist said only help is gastric pacemaker. No thanks!

BLADDER:
25 yrs. progressively worsening until now intermittent days of >30 bladder spasms/day. Anti-spasm bladder Rx hardly helps now. Moffit recommends a machine in my bladder. No thanks. Local urologist says permanent cath. Previous Dx = neurogenic bladder. Now – AN

SYNCOPE:
2 yrs. blacked out and hit my head several x /day = wheelchair + helmet = Mayo 8/16 after I passed out through a glass-top table. Due to severe insomnia, Mayo Clinic said “micro-sleep.” Stopped the last 2 yrs. Now experiencing intermittent syncope (“near-fainting”). 40-50 times in 1 day last week. Syncope = AN

DIZZINESS/IMBALANCE/STAGGERING:
24/7 with standing/walking. Previous Dx ataxia. Now = AN.

GI, LOWER:
2 yrs. intermittent BOWEL incontinence 2-10 x/d for days, then 0 for days/wks./mos. Previous Dx = pinched L5 + Sciatica R/L sides. Now = AN

SEVERE INSOMNIA

TREATMENT OPTION(s):
My neurologist said my only option is medical marijuana. I’m waiting on the State to renew my license. Mayo Clinic told me not to use it because “it’s a narcotic and you don’t need it” to deal with chronic pain. Really? I have 30 other chronic diseases/conditions.

ANYONE ELSE HAVE SIMILAR SYMPTOMS? WHAT HELPED? If the AN affects my heart, it could be fatal. If the PN and swollen foot worsens, I could be an amputee. The nerves are dying.

Thank you. Peggy 💖😊

REPLY

Hi @peggyella,

I moved your message to this existing discussion on autonomic neuropathy so that you can connect with members who are also talking about AN.
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.

Although previous research has shown that treating chronic pain is the number one medical use for cannabis, the underlying neurologic changes associated with clinical benefit remain unknown. I’d encourage you to read two recently published papers, about the question of using medical marijuana to relieve pain:
https://www.medscape.com/viewarticle/901689#vp_2
https://www.aan.com/Guidelines/Home/GetGuidelineContent/650

REPLY
@clairecas

Good morning Peggy,
I just want you to know I'll be praying for you. 🕊

Jump to this post

@clairecas Thank you so much, Claire. I truly appreciate your prayers. My love for and faith in God is what’s brought me through a lifetime of sickness. I’m sure the PTSD (which brought on a slew of things) started as a child during the abuse. That’s when I started having insomnia. After 11 years of sexual abuse, I was raped by a man overseas, at 22 my 9-day-old son died in my hands from encephalitis. When I was 15 I started drinking, at 16 I got crazy into drugs and ended up in a 30-day rehab hospital for anorexia and bulemia. I had chronic migraines at 18, fibromyalgia at 23, degenerative disk disease and peripheral neuropathy at about 40, soon after GI and bladder problems. Osteoarthritis, dysphasia, Arachnoiditis, Tardive akathisia, osteoporosis, edema, bowel incontinence, ataxia and I can’t even remember all the other conditions I have. LOL. I know I sound like a mess and I guess my body is! But I have peace that passes all understanding and joy that a lot of people don’t understand. The GOOD NEWS is that at 27, I accepted Jesus and he turned my life around! I’ve forgiven my father and the man who attacked me.
Now I’m 65 and in ministry helping abused women, the homeless, people in recover from addictions and alchohol and people with AIDS. I’m not bragging. I just wanna share how amazing God is. We suffer so we can help others who suffer.
My previous post was kindly moved from the Neuropathy Group to Chronic Pain Group. And I do appreciate it. After our moderator reads this, I’ll probably get moved to Brain Conditions. I’m not trying to be be silly. It’s just that I have so, so many overlapping conditions that I really don’t know which group to post on.
I can handle the chronic pain and I don’t take any narcotics for it. It’s the autonomic neuropathy affecting my organs that’s my main concern. It doesn’t cause chronic pain, but the multiple organ dysfunction is a daily issue.
Thank you again for your prayers. ❤️💫🙏🏼

Liked by clairecas

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Hi, @peggyella – I wanted to invite @johnbishop @mstephen @jmmb @marazion @di3355 back into this discussion, "Autonomic Neuropathy," to interact with you and offer any tips or thoughts they may have related to your recent diagnosis with autonomic neuropathy (AN).

@jobeo1 – how did things go for you with the 12-week high-dose steroid protocol?

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@peggyella

@clairecas Thank you so much, Claire. I truly appreciate your prayers. My love for and faith in God is what’s brought me through a lifetime of sickness. I’m sure the PTSD (which brought on a slew of things) started as a child during the abuse. That’s when I started having insomnia. After 11 years of sexual abuse, I was raped by a man overseas, at 22 my 9-day-old son died in my hands from encephalitis. When I was 15 I started drinking, at 16 I got crazy into drugs and ended up in a 30-day rehab hospital for anorexia and bulemia. I had chronic migraines at 18, fibromyalgia at 23, degenerative disk disease and peripheral neuropathy at about 40, soon after GI and bladder problems. Osteoarthritis, dysphasia, Arachnoiditis, Tardive akathisia, osteoporosis, edema, bowel incontinence, ataxia and I can’t even remember all the other conditions I have. LOL. I know I sound like a mess and I guess my body is! But I have peace that passes all understanding and joy that a lot of people don’t understand. The GOOD NEWS is that at 27, I accepted Jesus and he turned my life around! I’ve forgiven my father and the man who attacked me.
Now I’m 65 and in ministry helping abused women, the homeless, people in recover from addictions and alchohol and people with AIDS. I’m not bragging. I just wanna share how amazing God is. We suffer so we can help others who suffer.
My previous post was kindly moved from the Neuropathy Group to Chronic Pain Group. And I do appreciate it. After our moderator reads this, I’ll probably get moved to Brain Conditions. I’m not trying to be be silly. It’s just that I have so, so many overlapping conditions that I really don’t know which group to post on.
I can handle the chronic pain and I don’t take any narcotics for it. It’s the autonomic neuropathy affecting my organs that’s my main concern. It doesn’t cause chronic pain, but the multiple organ dysfunction is a daily issue.
Thank you again for your prayers. ❤️💫🙏🏼

Jump to this post

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/

Liked by Lisa Lucier

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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.

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