Who else has Autonomic Neuropathy?

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.

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..

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/

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

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 💖😊

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

@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. ❤️💫🙏🏼

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?