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Old 09-03-2018, 12:07 PM
Digitalx Digitalx is offline
Junior Member
 
Join Date: Sep 2018
Posts: 6
5 yr Member
Digitalx Digitalx is offline
Junior Member
 
Join Date: Sep 2018
Posts: 6
5 yr Member
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Thanks for the information, I have not read anything on either of these and find that very interesting. I have read on ARA290 in the recent past, but not much more than that.

Quote:
Originally Posted by Streetlegal View Post
I was diagnosed with idiopathic PN one year ago. I have chronic auto-immune conditions, including Celiacs and Microscopic Colitis, so definitely have gut problems.

Interestingly, in the light of your history, I have just started experimenting with my diet since my gut is in perpetual turmoil. Is there a connection? Maybe. Certainly if you have one auto-immune disease you are more likely to get another (if idiopathic neuropathy can be labeled "auto-immune, that is). Perhaps the correlation goes deeper, and gut problems can sometimes precede neuropathy. I don't know.

I am experimenting with my diet right now. I am cutting down on cereals and grains, carbs generally, and I'm surprised how quickly this has improved my gut.

In terms of neuropathy, my consultant suggests that mine should remain stable (my symptoms are paresthesia and constant calf fasciculations). He also says that most "idiopathic" neuropathies he diagnoses actually run in families (genetic) but many only experience mild, easily ignored symptoms (eg., twitching eyelid).

There is research that offers hope for those with diabetic PN in redesignating pirenzipine which is an existing ulcer treatment. Human trials are now taking place. You can google Winsantor (the company behind the research) to find out more, though obviously this is still at trial stage and even if it impacts one cause of neuropathy it doesn't necessary mean that it will work for all. The company is taking a very proactive, humane line to their research, so my (limited) communications with them offer me some hope for the future. This treatment, in lab specimens, has been shown to halt damage and even regrow nerves--but humans, of course, are a different . . . er, animal.

Also there is very limited research that viagra might assist healing (labs), but, again, in diabetic neuropathy in which the causal mechanisms might well be different. Google viagra and nerve damage etc. If I could get my hands on a two months supply of viagra, I would self-trial it!!

The condition has affected me very badly, but particularly psychologically, particularly since the symptoms are so weird, difficult to explain to others, and make me feel isolated; however, they do--please God--seem to have stabilized. I don't like taking nortiptyline but it does seem to help a little in stabilizing the buzzing and tingling. My calf fasciculations never stopped, though.

I think you will grow more accustomed to the condition, and make a peace with it.
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"Thanks for this!" says:
janieg (09-07-2018)