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Demyelinated nerves NOT MS

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Chronic Pain
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Posted 10/27/2013 9:00 PM (GMT 0)

Does anyone know if there are non autoimmune or other known causes?        

Posted 10/27/2013 10:22 PM (GMT 0)
I have had Anemia for over 20yrs which can strip the myelin from the nerves causing "ME NERVE PAIN" If I have injury, or trauma even mosquito bites, delayed not immediate does it travel or attack area.  Pain is like the neuralgia from shingles which I have never had an external outbreak.  I had chicken pox @ 17 (p/mom 2x?) Medical or minor issues from the past now I have a damaged Femoral nerve pressure base of skull lost 4 teeth all left side ear jaw I am miserable on disability which runs out soon, I was hoping to have all DR appts and test with a diagnosis but  appts are far apart and any test  
Posted 10/28/2013 5:30 AM (GMT 0)
Dottie9999, Have you tried googling it? I tried it and it list one main cause, called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). NIH National Institute of neurological disorders and stroke has an article about it, as do several other places. Anyway something you may want to check out.

Good luck to you.

White Beard
Posted 10/31/2013 8:57 AM (GMT 0)

, My Dr's didn't mention CIPD when I have asked is there any thing that is NON MS causing demyelinating nerves looked like deer in head lights.    I have asked if they know of any Dr who can, no response.  we are not even 2014 and my appts have been 2months apart, it could be 4-6+months in 2014. I just read info on My Insurance thru my spouses employer, they say your PC can do had a list of 6 medical needs I felt like they are trying to get rid of specialist & I have a few.  I checked on my Meds and 2 are not free not knowing how much they will be.  This plan looks like "ACA" and has changed for the WORSE and our out of pocket and deductible I am so UPSET! sorry Venting.  my vision has changed got glasses last Dec now have to get new lenses.  I am not getting better slowly going down hill and I am scared.         

Posted 11/1/2013 4:24 AM (GMT 0)
Dottie do you have any major university that has a medical school, that is relatively close by, that you could go to? Or any major medical center, like Mayo clinic or some other one? If possible you might be better off getting seen and evaluated at somewhere like that, to find out what is going on. Even MS can be extremely difficult to diagnose some times, and many people go years and years before getting a proper diagnosis. If your not happy with your medical treatment and if your insurance let's you, you might try going to somebody else to get evaluated by. I know it can be very frustrating, I do wish you all the best!

White Beard
Posted 11/2/2013 4:24 AM (GMT 0)
Yes my RA & Neuro are UCSF.  I was called by Medical Assit Mon 10/20 to advise dr calling in script for B12 injections,  I have called to find out when was told on 10/31 it's still in her in basket?  I really like both Dr's and have had test done but again appts are so far between.  I'm just so frustrated sad mad what I hate the most besides PAIN is my mood swings and lack of patience.  

         

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