I would get tested for Vit D levels. This is turning out to be important for PNers and people with chronic pain/illness. Many on these forums find out they are very low when tested.
Also I'd get more aggressive with the B12. Injections often don't seem to work well. I'd do 5mg orally daily for 3 months and see if there is any difference. (take on an empty stomach so it will work best)
10 yrs is a long time...when long time issues are present, I'd look to diet as well. Gluten is the prime cause of long term neuropathy. But other foods may affect you. Nightshade veggies, dairy, soy etc. Doing an elimination diet carefully for one thing at a time, may be very revealing for you.
I take it you have had autoimmune testing to rule out Lupus and other autoimmune diseases?
If you are taking any RX drugs, look at them carefully. Many drugs can be culprits in PN.
Quote:
Originally Posted by pninn
Thanks for your replies!
No, there's no neuropathy in my family that I know of and as far as I know I am not diabetic (though I've heard that you can have it despite negative diagnosis). I've have had most of the standard tests including a muscle biopsy and no definitive cause has been suggested, so I guess we'll call it idiopathic.
I've been taking b-12 injections, folic acid, l-carnitine, lipoic acid, co-q10, lots of omegas and anti oxidants, etc. in varying amounts and combinations but over the long run nothing seems to have helped (though of course I couldn't say for sure that it would not have been much worse in the absence of all the above).
Mrs. D, when you say it will progress, what is the ultimate outcome? In other words, I'm wondering, at the rate I'm going, does it become impossible to walk at some point? What exactly should I be expecting?
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Weezie looking at petunias 8.25.2017
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