New to neuropathy, terrified and seeking advice from you guys

Posted by tom01255 @tom01255, Aug 21, 2022

I've had neuropathy in my feet for a couple of years, and the neurologist I consulted has never tracked down the cause. I didn't worry too much because it was just a numbness in my toes. This summer, though, it spread to my hands, up my arms, into my shoulders and into my legs. The neurologist did a biopsy and says that it gave no clue to the cause. He hasn't recommended any treatment, and my condition is worsening daily. I've contacted one university neuropathy clinic and been told that it will be a couple of weeks before they decide whether the doctors there will see me. I can't seem to get any medical personnel to take me seriously.

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@flag64

I somewhat agree but I’m also frustrated with my Mayo neurologist after hearing from this group that many of you also have numbness and pain in your lower abdomen. I asked mine if this could be my problem, he said absolutely not so my GI has spent the last 9 months trying to locate a neuroendocrine tumor (had one already) when my symptoms might be SFN! They should communicate with each other and maybe this neurologist doesn’t specialize in SFN…is there such a Dr?

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Great Question. I would love to know.

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@dongoldwater

what is an EMG? I am new to these issues.

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EMG is electromyography.

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I know what you mean. UT Southern in Texas wants to do a video visit.

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@johnbishop

Hi @logman1, You mentioned in a previous post that you now have your A1C down to 7.8 from 12. Has that given you any relief with your symptoms along with the PT you are now doing?

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Not much of any. But I think its reached a plateau. Im very weak.

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@mironch

EMG is electromyography.

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I had this. It tests muscle and nerve function. Its not pleasant. It won't kill you but for what good it did ,I wouldn't suggest it.

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I think that's appalling that they are not taking you seriously. They don't have to experience the pain and discomfort you are in. That's the whole problem.

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Is there any chance you've been taking high doses of B6?

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Suggestion - I sent an e-mail and decided not to do it by phone. In writing, you are best to explain your condition rather than have someone on the phone take your info verbally and forward to the neurology dept. They are busy so in your communication, don't make it long, start with how it started which tells them a lot and where you are today. Request to be seen. I think with my PN, they were hoping to learn something about my condition in order to help others. If they are willing to give you an answer in a few weeks as to seeing you or not, that is about right. Keep trying and if possible, apply at several well-known locations. Wish you the best on your journey!

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I didn't know that dizziness was a symptom of neuropathy. My MD didn't mention it. I was wondering why I have been getting dizzy. I thought it was because I was smelling ant poison (attempting to rid the house of n invasion of ants). I am taking Gaapentin and so far it seems to help me sleep. I am not experiencing the pain in my shoulders and hands (at least for now). My neuropathy started with tingling in my shoulder and down to my hands. I believe the onset was from wearing a steel helmet everyday for 5 years while in Vietnam. I remember a grinding sound in my neck which disappeared when I left Vietnam.

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@hoeewaa

I didn't know that dizziness was a symptom of neuropathy. My MD didn't mention it. I was wondering why I have been getting dizzy. I thought it was because I was smelling ant poison (attempting to rid the house of n invasion of ants). I am taking Gaapentin and so far it seems to help me sleep. I am not experiencing the pain in my shoulders and hands (at least for now). My neuropathy started with tingling in my shoulder and down to my hands. I believe the onset was from wearing a steel helmet everyday for 5 years while in Vietnam. I remember a grinding sound in my neck which disappeared when I left Vietnam.

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Hi @hoeewaa, Welcome to Connect. I believe the dizziness is a common side effect of the Gabapentin.

"Gabapentin (Neurontin, Gralise) is a medication used to help manage certain epileptic seizures and relieve pain for some conditions, such as shingles (postherpetic neuralgia). Dizziness and drowsiness are common gabapentin side effects. Weight gain and uncoordinated movement are possible side effects."
-- Neurontin side effects: How do I manage them? - Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/epilepsy/expert-answers/neurontin-side-effects/faq-20057893

Sometimes medications can have side effects when combined with other drugs or over the counter products. Have you discussed the dizziness with your doctor?

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