Megan,
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I am just trying to eliminate causes for this PN as the doctors seeem to have given up!
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Sometimes, it does feel this way, doesn't it? I truly do not think they know what to say. My neuro, on my first visit, had me so upset. "No, I don't think you have neuropathy, no, your reflexes are too good for neuropathy, no, ........." and I left the office in tears, thinking--what now? Yet, he had scheduled 2 MRI's, and EMG and another test for my tinnitus. The brain MRI showed all's good in my brain
thank God I have one, the cervical MRI showed a herniated disc at C5-6, just a minor setback, I guess, and the EMG did show peripheral neuropathy in both wrist and hands. Then when I questioned him about WHY my feet, legs, arms, and shoulders give me so much trouble--WHY, I have the buzzing, the vibrations, the numbness, swelling, cold spots, burning, etc, he says to me, "Well, I'm sure you probably do have small fiber neuropathy, yet we really do not have an effective test for that!" I am thinking--you sent me away thinking I am nuts and I'm not!!!!! GRRRRRRRRRRRRRR!!!! It's so hard for them to admit to a patient that you actually know what is wrong when you walk in the door, they don't want you to know before they do, yet sometimes it takes them so long to figure it out.
No doctor figured out my celiac disease, actually, I am not doctor diagnosed so maybe I should say, my gluten intolerance. Yet, no doctor will ever convince me that I am not celiac. At any rate, there is no difference for me, celiac, gluten intolerant, I am gluten free forever. I was sick for well over 20 yrs and they didn't know why--now I deal with all these other mysteries. My neuropathy actually was diagnosed as carpal tunnel before I went gluten free, about 9 years ago. First my hands were going numb and the doctor put me on anti-inflamatories and within the year, my toes were going numb. When I questioned the doctor about my toes, he told me the nerves in my hands are the same nerves in my feet, that they run all through your body--end of story. I am thinking that was the beginning of my neuropathy, before I went gluten free. Gluten free slowed my progression considerably, yet it never went away. Some people do recover from their neuropathy when they go gluten free.