@lorirenee1, Hi Lori, thanks so much for writing. Yes, the neuro consul...ugh, oh ugh. First off from the rumors I have heard he is supposed to be the best neuro on my health plan. He said he wants to try and figure what is going on with me. I gave him a long chronological narrative of how things started. He was very appreciative for that and also I had the pics of my red and hot feet during one of those flares. He thinks three things are going on. He is going to do the EMG June 12th which I will find out if I have large fiber neuropathy. If that is normal, then at the same day he will do a skin biopsy to test for the small fibers. He also thinks the red, burning flares intermittently are caused by a rare condition called Erythromelalgia. Thankfully I had the pics. He sees it rarely and actually learned about it five years ago from a dermatologist. It’s tricky to diagnose during a consul unless you’re flaring. My feet during consul were very cold, that’s when the pain is the worst. Also, my B6 levels four months ago were five times higher than normal. That’s when the burning began to get intense so I stopped any vitamin supplement although my PCP said he’s never seen B6 toxicity and said the levels were fine...I beg to differ. I also have a good diet, which contain B6 naturally. He very much believes in B6 toxicity and said that it could take one to two years for symptoms to subside unless I have permanent damage. So, it’s really difficult to speculate until I get the tests.
I just feel mad at myself for not being conscientious enough about the B6. The neuro said it’s a big problem now as there are so many supplements and energy drinks that contain toomuch B6. In addition, some people can’t process it properly. I think the meds I take really do a number on my digestion. So I battle with that as well....
You would laugh, my poor cute young rookie Podiatrist is so lost in the dark when he sees me. He did give me the toe injection but all it did was stir up the nerve pain...Ay, yi, yi...but not as bad today...
Lori — I so hope and pray that the epidural will help you...you have been through quite a bit with cancer, pain, and feet issues. I can’t remember why you sought out a different neurologist. Did the first EMG reveal PN? You are so right about both of us pushing ourselves. I went swimming this morning and I just do not want to stop when I am in that water! That’s great about the cardio machine at PT for you...what is it? I think I just wrote you a book!!!! Take good care -Laura

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