www.incontinentsupport.org

Has any one on here been diagnose with Autonomic Neuropathy ?

Thanks Wink

Wink

I have been diagnosed with both CIDP (Chronic inflammatory demyelinating polyneuropathy) and autonomic neuropathy.
I was diagnosed with CIDP in 1997 and on disability the same year. Autonomic neuropathy just goes along with CIDP but officially diagnosed with autonomic about 10yrs ago.
IBS and urinary incontinence was the first symptom I had and I went many years before I found the right neurologist that diagnosed me.
I am receiving IVIg (Intravenous Immune Globulin) every three weeks over four days. I start my next infusion tomorrow.

I hope you stay in touch
Lyle

And how are the infusion`s working for you and is it for the Neuropathy or that other that I don`t know what it is. Lyle.Thank`s for the come back.

Wink

Have you been diagnosed with autonomic neuropathy?

I see you are 66yrs old I am 67yrs old.

Usually this type of neuropathy goes along with Peripheral Neuropathy that affects the extremity’s first. Autonomic neuropathy effects the inter organs like bladder bowel heart and so on. It is an autoimmune disease.
The immune system attacks the nerves destroying the Milan sheath that protects the nerves. Think of it like this if you take an electrical wire and remove the rubber sheath that protects the copper part it will short out. Well this is what happens when the Milan sheath is destroyed it shorts out causing interruption of signals to and from the brain.

IVIg is gamma globulin or Plasma from a donor administered by IV. It is given to confuse the immune system so it won’t attack the nerves instead attack the foreign plasma. This is a simple explanation I hope it explains a little about the world of neuropath.

You asked if it helps and that is a hard question to answer. I will say yes it does help me in slowing the spread of neuropathy. I been receving IVIg for 19yrs.

Autonomic neuropathy can cause heart attacks lungs to shut down just about anything internal can be effected.

There is a lot of info on the web go to Google type in CIDP or autonomic neuropathy.

Do you have any pain from neuropathy?

I hope you are wrong and do not have autonomic neuropathy it is an awful evil disease.

Lyle

I hope I am also Lyle. But no one has gave me and answer of what it is that started it.What eve it was was all over a few days last year.

Wink

I was diagnosed in 1997 cause unknown.

I dought anyone can tell you what caused it.

Like you I wanted an answer to how I got neuropathy and went through the entire test several times to try and find the cause but according to my neurologist the cause could not be found.
But I was doctoring for incontinence many year before that. Bowel incontinence was the first sign something was wrong.

Lyle

Sounds exactly like MS to me! The autoimmune system attacks the myelin and stops the nerves from transmitting impulses. I was diagnosed with MS in 1983, some 11 years after the symptoms started.

Deen

Deen so far since it happen when I went in the hospital that time it has got no better or no worse.They ran test for five days and sent me home incontinent just like I went in.As said what ever happen happen all in one day.Other than having a little pee leak now and then when real full I had never had any other trouble or even been in a hospital till the week before that with a mild hart attack.Or really just some pain around it and they found a small blood vessel like a spider vane that stopped up and cause that.I walk in that time just to be sure what was going on.They did`t do any thing for it and sent me home.Then this was the next week that this happen I walk in then but I was leaking urine every five minutes They did another hart cath and did not find any thing.But I was wetting my self the whole time I was on the table.That was a real embarrassment as every one in there was a nice looking women.Even the doctor.
Forty years ago that would be a dream come true to have about five women around you naked on a table with there hands on you but not running a tube through 2/3 of your body and a towel soaking up pee so it did`t get around where the cath went in.since then I don`t think I have any shame as two of the nurses I see quite often at my wifes doctors appointments are in that hospital any time she has any thing done.As they work in out patient operating room now.

Deen

You are correct some neuropathy can look like MS.
The type I have CIDP and Autonomic neuropathy can do just about anything to you that MS can do. MS attacks the nerves inside the spinal colum where neuropathy attacks the nerves out side the spinal colum.
In the end both are a very sever life treating diseas that can cause many problems.

Wink says his incontinence happened all at once, that is the way it happened to me also. When a nerve is distroyed what ever it controls is effected.

I have been fighting it since I was 36yrs old I am now 68yrs old. My first problem I woke up one morning and messed ln my sleep. It was't a small amount but a real mess. From that my bladder started to let go I had no worming
Now I can't urinate on my own and use a Foley catheter 24/7 and live on enemas and laxitives.
@
Lyle

Sounds like MS as it also attacks the Myelin sheath covering the nerves. Was diagnosed in 1983 after almost total bladder control loss and a six weeks of double vision.