Can Someone Point Me In The Right Direction:

[the4richards]

As I read (search) posts I keep seeing that POTS can be secondary to diabetes mellitus. Is this good or bad? Is "secondary" significant? Potentially curable? How do they know?

Can anybody explain what that means or point me to a website/link/publication?

And no...I have not been to an Endo...my primary doesn't think I need to see one.

[firewatcher]

Yes, dysautonomia can be and often is secondary to diabetes mellitus. I can NOT stress this enough: GO TO AN ENDOCRINOLOGIST!!!!!!!! There are lots of systems that will become out of whack if you don't get a handle on your blood sugar. An endo will run tests and understand nuances of your condition that a GP or internist just cannot handle. Depending on the cause of your diabetes (type 1-autoimmune or type2-overweight) some of your symptoms are reversible. My Father was a diabetes educator for years and trained diabetes nurse educators, he rants about GPs who ignore or mismanage their diabetic patients! This is not a "little blood sugar issue," it is a serious, life-threatening condition. Go to Pubmed.gov and put diabetes and autonomic in the search box and read away! Good luck and keep us posted.

[the4richards]

Thanks Firewatcher. I needed a kick in the pants. I just made an appointment with an Endo....

[cnm1]

I agree- for diabetes see an endocrinologist!!! I have a pt (Iam a nurse-midwife) whose FP is happy that her sugars are in the 200s. He said that is her "normal" And she is having vision problemss!!!!!!

[kkrylee]

My daughter started with symptoms at 13 yrs, at 16 symptoms became severe. Now 18 and diagnoses with POTS and Autonomic Neuropathy 1 yr ago. My question is that all research shows that Autonomic Neuropathy is a symptom of another illness, mainly Diabetes or Auto-Immune or Tumor such as Pheochromotoma. But what if all of those have been ruled out?

She has been tested several times for Diabetes with Negative results. She was tested for Pheochromotoma and Mastocytosis, both Negative results. ANA has been done 3 times, Negative. Other testing for autoimmune has been done, also negative. Like you guys, she as a 2" binder with test results that are all basically normal except for the autonomic testing. MRI's and Hormone levels are all fine also.

So we are left with Autonomic Neuropathy that is getting worse each month but since we have no cause for the Autonomic Neuropathy, we can't try to stop it. Does anyone have Autonomic Neuropathy caused by something other than the usual suspects listed above?

Her most recent episodes, other than every symptom listed for Dysautonomia, have been episodes of muscle twitching (tongue, eyes, and back) with worse than normal vision issues, nausea and dizziness lasting less than an 1 hr.

I can't get a doctor to tell me what to expect 2 yrs from now if nothing is done. Her meds now include Mestinon for BP and Robinul for nausea. She is trying to finish 1st yr of college majoring in Neuroscience with the hope of helping Autonomic Disorders in Children.

[erik]

Yeah, I think I read that the most common link is "peripheral neuropathy" caused by the diabetes... then the little nerves out in the legs and such to control vascular response become compromised. So then the chain of events needed when one stands up gets faulty. This might be one of the more common ways a regular doctor encounters our sorts of troubles.

[ramakentesh]

So we are left with Autonomic Neuropathy that is getting worse each month but since we have no cause for the Autonomic Neuropathy, we can't try to stop it. Does anyone have Autonomic Neuropathy caused by something other than the usual suspects listed above?

Most are idiopathic and presumed to be either autoimmune mediated (in most cases as a3 acetylacholine receptor or postganglionic receptor autoantibodies identified) or patchy long tract/small fibre neuropathy) or in rare cases congenital.

[sue1234]

Get tested for celiac disease. Even if negative, gluten sensitivity can cause PN, along with many surprising other bodily symptoms, such as muscle issues.