Hi all, just curious…anyone with autonomic neuropathy? I’ve had T1 for almost 30y and feel suddenly like things are going wrong. I’m not sure it’s all DM related (I’m also 6m postpartum) but I wonder lately about autonomic neuropathy. Seeing endo about it in the next couple weeks. Any experienced folks, or words of wisdom, would be awesome.
First of all, congrats on the new addition!
I have had T1 for almost 47 years. I had to look up autonomic neuropathy, and was surprised to find so many of the symptoms happening to me! Here’s where I looked: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001780/
As far as I know there is nothing to be worried about, but mostly symptoms to treat and manage. It is not life-threatening, but can be uncomfortable (bladder control, etc. The article states that each symptom is treated individually, since it isn’t in itself a disease, but a group of symptoms. Hope this helps you!
In July 2008, I was dx’d with “Diabetic Orthostatic Hypotensive Autonomic Neuropathy”. Last June, my blood pressure dropped to 59/38 and the paramedics were called. Orthostatic Hypotension can cause instant death, as per the paramedics.
From the Merck Manuals for Healthcare Professionals, the symptoms are…
“Common symptoms of autonomic neuropathies include orthostatic hypotension, neurogenic bladder, erectile dysfunction, gastroparesis, and intractable constipation. When somatic fibers are involved, sensory loss in a stocking-and-glove distribution and distal weakness may occur.”
There are probably many long timers, that may have autonomic neuropathy, and either do not wish to share that information, and / or they don’t know that they have it.
Hypo-unawareness is also a symptom of autonomic neuropathy, even though not listed above. It is, however, listed elsewhere in the Merck Manuals. I’ve been hypo-unaware for around 8 years. Running my numbers higher for months, have done nothing to bring back any signals.
Of course, as with anything else 'betes related, everyone and everything is different.
DX July 1984 IDDM (=250.01=Type 1) ~ member since 2/15/2011 on TuDiabetes
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Hi Tziporah, here’s a blurb from my blogpost on Autonomic Neuropathy:
Diabetes can cause dysfunction of any or every part of the autonomic nervous system, leading to a wide range of disorders. And these are serious. Among the most troublesome and dangerous of the conditions linked to autonomic neuropathy are known: silent myocardial infarction (MI), cardiac arrhythmias (abnormal heart rhythm), ulceration (formation or development of an ulcer), gangrene, and nephropathy (damage to or disease of the kidney).
Essentially, diabetic autonomic neuropathy impairs the ability to conduct activities of daily living and lowers quality of life. Autonomic neuropathy is also associated with an increased risk of sudden death. It also accounts for a large portion of the cost of care.
The prognosis is bleak: While treatment relieves pain and can control some symptoms, the disease generally continues to get worse.
(I"m posting an extract of my blogpost on TuDiabetes as well, but you can read the full article here.)
Hope this answers some of your questions.
I have, personally, never heard of autonomic neuropathy - but I have been suffering with diabetic neuropathy for close to 12-years, now (diagnosed T1, in 1990). My neuropathy began just peripheral, and stayed that way - though, quickly taking control of my legs and arms from me, within the first two years. I went from using a cane, to a walker, within the first 3-4 years; and have continued to lose mobility, despite all doctors' and physio-treatments. I have been forced to spiral down, to almost full dependence on my electric scooter for about a year now - just kept falling down too many times, with the walker. The neuropathy has complete control of my bowels, now; I need to take 4 different stomach pills, just to maintain some type of "balance", so I can go out in public. The neuropathy has control of my ability to swallow - leaving me sometimes choking on my own saliva; and finding it almost impossible, sometimes,to take my pills. And with the neuropathy creeping into my brain, I am showing signs of early dementia. Again, I don't know if any of this relates to "autonomic neuropathy"; but, I certainly hope you are having a better time with it, than I am! Dwayne
Autonomic neuropathy can affect several systems. I have it with my heartrate (typically higher than normal). I was on a beta blocker and it was fine. Gastroparesis is also a form of autonomic neuropathy. What symptoms are you having?
Along with the ashemic heart disease - which I expect to lead to open-heart surgery in the next month or so - I have an arrhythmia that bothers me from time to time. And my bowels are all screwed up. I need 4 different stomach pills - which would not, normally, be taken together - to maintain some type of balance in keeping my digestive tract behaving itself.
I don't know that I have this, but last year I developed an arrhythmia which I'm now seeing a cardiologist and taking a beta blocker for (heart rate goes way too fast sometimes). Autonomic neuropathy came up when I did research, and of course since I've had diabetes for 21 years I wondered about that. But, information also came up saying these cardiac issues are quite common in otherwise healthy young women, so who knows!
In 2008 I started with aches and being unable to settle stomach problems so after going into hospital I lost my appitite but the couldn’t find out what was wrong after being in two weeks and losing lots of weight I got sent to surgery after being physically sick to have my appendix out. But for some reason by lying in the hospital bed for weeks I had now become unable to stand for long periods. Didn’t really feel much pain as I was on morphine every four hrs. After the surgery still in for another week but got sent home and referred to a pain clinic. I went to my doctors the ame week and he diagnosed me with neuropathy an sent me for tests an started me on tablets. I couldn’t work or walk now and had dropped to 6 stone. The test showed I had it in my feet and stomach with low blood pressure and irregular heart beat. After a few different types of tablets I just managed on tramadol and slowly started putting on weight. It took 2 years to get back to normal but I am off all tablets gained the weight plus a little extra and can wear hi heels again. I still get sharpe pains in my feet sometimes if they get too hot and have lost a lot of my muscle strength in my legs not to mention loosing an appendix I didn’t have to lose.