Most distressing symptoms...

[Don]

I am diagnosed with autonomic neuropathy.  It comes with many distressing symptoms.  It is a topic I do not hear about much on this forum and some of the symptoms are a bit taboo.  I am still learning about my illness.  You all are teaching me new things everyday.  Much of what I experienced is trial and error.  I have chased a diagnosis down for 8 years.  Now, with a looming trip to Mayo, I may be close.  It has been one thing after another with symptoms pyramiding on top of one another as the years have gone by.  Probably, the most troubling is my incontinence.  I have some bladder control but none of bowel.  I know it can be fairly common with my type of neuropathy but it is never discussed.  I feel alone.   I have seen many specialists and have been through all of the, rather embarrassing I might add, tests.  I have tried medications but refused surgery as it was too risky and not guaranteed.  For the last 8 years, I have resorted to using adult diapers.  It is extremely embarrassing.  It bothers me because I read about my condition online but have never encountered anyone like me.  But the literature is out there.  I know people like me exist.  I don't know how common my neuropathy is so I don't know how many people may be out there.  I just know I feel like the only one.  

[TCP]

Hi Don

I have bladder leakage/full incontinence (and some bowel issues, too). Yes, it fairly common, mainly in diabetics with autonomic dysfunction, have such issues. I don't have diabetes so doctors were not brilliant will dealing with my case. I use incontinence pads and pants. 

The autonomic neuropathy has caused lung, bladder, bowel and liver problems for me. So far all neurologists have been unhelpful as regard this and the peripheral neuropathy I have.  

Do you know what is causing your autonomic neuropathy? If it is diabetes for example, if the diabetes is more controlled it may improve. In my case with POTS, if my POTS improves the bladder issues do improve. I hope that you can get some help here. 
 

 

[Tara B]

I seem to have the opposite problem, nothing will come out!  I went to Mayo and had the whole series of awkward and embarrassing tests so they could measure the dysfunction which was readily apparent.  I tested in every department, it seems, at Mayo.  I even tested poisitive for POTS on their tilt-table.  Then the neurologist told me they couldn't rule out this all being caused by "anxiety!"  I was in shock by neuro's final analysis.  They literally walked me out to the hallway and said goodbye. ...Dr. Low, their head of dysautonomia.  Fortunately I was also seeing the head of rheum while I was there, too, Dr Matteson.  He found anti-nerve antibodies in my blood and recommended immunosuppressive therapy, I have been on immunosuppressants through my local rheum, who he knew and liked.  Symptoms are better on these meds.  My recommendation would be to try and see rheumatology while you are there, too.  And don't worry, while they are "testing" on you, know that many of us have been there before you!

[Don]

Hi TCP and Tara.  No, I don't have diabetes.  My glucose is normal.  The doctors are still working on the cause of my neuropathy.  It could be the result of medical treatment for my Bipolar Disorder.  I have been on a lot of medications over the years trying to get stable.  Some of which have neuropathy as a side effect.  So it's possible my neuro issues are iatrogenic.  That what we are trying to figure out.  My neuropathy presented itself first with enuresis.  It's been all down hill from there.