Quote:
Originally Posted by titanrules
Hello to all of you!
Like many of you, my history is long and confusing not only to me but to doctors as well.I just saw the doc that did the skin punch biopsy and it shows yes to sfn in feet but on calf there is none. This is so confusing because ethe very painful burning in my feet is what I feel in my arms, trunk, back, neck. And mouth without pain meds even with them during a flare up. Since 95 I have had balance issues, visual problems, numbness and weakness in my legs, latere pain in muscles and then finally in the skin. Evoked potentials of legs and eyes showed delays in both but mri was clear, B12 deficiency was positive so tentative explaination was possible MS/ Demylenating syndrome. Aas I said oveer the years I developed pain in muscles,fatiguE, many UTI's, reactions to many meds, and finally this god forsaken burning started in my back,lost my voice completely first 2 times, then the burning spread to my arms legs body and feet. Now today I get the results about SFN only in my feet and they don't know why I burn everywhere else. My skin has become wrinkled and dry especially on my arms. My Evoked Potentials on my legs are worse now then every but no delays in my eyes. They are trying me on a drug called methotrexate as steroids were helpful during the initial onset of burning skin. Which scares the heck out of me when I read the side effects, but my question to all of you is do any of you feel this horrible burning all over but have the Skin punch biopsy only reflect SFN in the feet? The burning in my feet is actually less painfull than what I feel all over the rest of my body. Have any of you tried this medicine and did it help? I currently take fentanyl 150 mg patch with 8 mg dilaudid 4-8 hrs. So I am hopeful the new med works and I can lessen the pain meds. I sure appreciate anyone who replies. This is a great site and has been helpful in my quest to find answers. Looking forward to hearingg from you.
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Welcome to NeuroTalk:
Can you elaborate on the bolded statement in your post, for us?
Do you know your actual numerical reading for the B12?
You must be in significant pain, based on the fentanyl dose.
Can you tell us what drugs you were taking when this started?
Methotrexate is used for autoimmune diseases. Did you have testing for that too? Was it positive?
I think with time as the nerves dwindle in one area, that spot becomes numb. It is when the nerves are actively being damaged that the burning is felt. So if the biopsy shows loss of nerves in the skin, you will actually feel LESS over time there.
It is important to have some treatment for an inflammatory/autoimmune process because that process can attack the nerves that run your heart and stomach. You don't want THAT to happen at all.
It sounds like your case is pretty complex. And yes, there are and have been many people here who have body-wide burning pain.
You might want to look over the subforum at the top of the page here, there are many informational topics and links to medical sites save there.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei
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Weezie looking at petunias 8.25.2017
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