Question: What testing have you had for neuropathy?

Posted by bettyg81pain @bettyg81pain, Jul 8 9:14am

I just got a call from the nurse in my neurologist office that wants me to come in for a more extensive testing-first one they did just said that I did have severe neuropathy-next test showed that it was an auto-immune problem and they needed to do another test to see if they can correct the problem or if they needed to refer me to another type of doctor (forget what type she said)-have all of you gone through this same testing?
At least they are trying to find a solution rather than saying tough luck.

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Had 2 EMG tests/Genetic test/and spinal tap-excess protein. Neurolist conclusion i have CIPD tried IVIG no relief only severe excema over entire body.

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@anoyymous123

Had 2 EMG tests/Genetic test/and spinal tap-excess protein. Neurolist conclusion i have CIPD tried IVIG no relief only severe excema over entire body.

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Scotch on the rocks takes care of all neurological issues. I’m a little wobbly after having a few but it works and cheaper than meds.

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@cit10jetjockey

Scotch on the rocks takes care of all neurological issues. I’m a little wobbly after having a few but it works and cheaper than meds.

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I take this as humor, but maybe not. Lol. I used to be able to relax enjoying a nice glass of wine while dancing in my kitchen and preparing a nice dinner on Friday night. I looked forward to it. It doesn’t always workout that way lately due to multiple reasons, but I hope I’ll be able to resume my leisure before too long.

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@celia16

I take this as humor, but maybe not. Lol. I used to be able to relax enjoying a nice glass of wine while dancing in my kitchen and preparing a nice dinner on Friday night. I looked forward to it. It doesn’t always workout that way lately due to multiple reasons, but I hope I’ll be able to resume my leisure before too long.

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Good morning!

Going by my proclivities, I definitely take this as humor. I've been sober for more than 30 years, and yet I'm still making wry jokes about the fun of drinking (because, for me, drinking WAS fun, and today, to say that it wasn't, won't change a thing).

So much of growing older is about having to "give up": one year, giving up pleasurable activity such-and-such; the following year, being advised to forego yet another long-enjoyed delight.

The results of several tests I've undergone in recent years have indicated an urgency to "give up" something. To preserve my sanity and sense of self, I've discovered that every time I'm confronted by a need to surrender another of my life's pleasures, I must find a suitable substitute—and to find that suitable substitute pronto!*

*My current sepsis infection has me substitute-searching right now.

Ray (@ray666)

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I had EMG/nerve conduction test plus two different punch biopsies for small fiber neuropathy.
Diagnosis
Severe axonal sensorimotor peripheral polyneuropathy
Small fiber neuropathy
Cardiac autonomic neuropathy
- two one month holter monitor over a year apart showing bradycardia/tachycardia/tilt table testing

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@ray666

Good morning!

Going by my proclivities, I definitely take this as humor. I've been sober for more than 30 years, and yet I'm still making wry jokes about the fun of drinking (because, for me, drinking WAS fun, and today, to say that it wasn't, won't change a thing).

So much of growing older is about having to "give up": one year, giving up pleasurable activity such-and-such; the following year, being advised to forego yet another long-enjoyed delight.

The results of several tests I've undergone in recent years have indicated an urgency to "give up" something. To preserve my sanity and sense of self, I've discovered that every time I'm confronted by a need to surrender another of my life's pleasures, I must find a suitable substitute—and to find that suitable substitute pronto!*

*My current sepsis infection has me substitute-searching right now.

Ray (@ray666)

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I see! Yes, I get it. I made a point to enjoy a glass of Pinot Grigio tonight while dancing to Into The Mystic while preparing dinner! Very enjoyable and I hope to retain the ability to do it for a while yet. I did give up sweets for the most part to help with my weight loss and fitness journey (and manage type I diabetes). That was a wise decision though.

Sure hope your sepsis is better and that you’ve discovered a substitute pleasure!

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@celia16

I see! Yes, I get it. I made a point to enjoy a glass of Pinot Grigio tonight while dancing to Into The Mystic while preparing dinner! Very enjoyable and I hope to retain the ability to do it for a while yet. I did give up sweets for the most part to help with my weight loss and fitness journey (and manage type I diabetes). That was a wise decision though.

Sure hope your sepsis is better and that you’ve discovered a substitute pleasure!

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Hi, Celia! Yes, I've found several substitute pleasures. None comes quite close enough to be a perfect match, but each comes damn close. I'm pleased to be able to say that. Life goes on, doesn't it, as do we, until … well, that's another story. Take care! Stay strong! Keep dancing! –Ray

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@njed

@bettyg81pain Like Ray, I'm not sure I ever heard of the medical term peripheral neuropathy. After 1st test, doctor said looks like you have peripheral neuropathy. Two hours later, I'm online searching what I can about PN. That was 10 years ago and the search for information continues on even today. I had several neurologists do EMG testing, oh yea, you have PN. That I know. So, after a degree of frustration, I decided that I needed to get a variety of tests done, find out what's really going on. I wanted a neurologist very familiar with PN. I applied at Mayo in 2019. In 2020, flew to MN and they did lots of testing all in a few days. My symptoms were complex, and I had prior ENG test results along with other tests to show Mayo what testing I had prior to contacting them. Try to get as many tests done that you can. Your tests may provide answers. I always asked for copies of my fest results including any MRI's. In the future, should you wish to apply at a Mayo facility or perhaps a major teaching hospital, all the prior test results will be a real asset when making application. By the way, I found out that some tests were done to rule things out which helps neurologists to a diagnosis. Hope this helps, wish you the best. Ed

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Bottom line is did Mayo help you in any way with your neuropathy??? Balance? Pain? Etc?? Thanks!!

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n one. i have a physical in Sept. will ask then

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@bettyg81pain - Did Mayo help with pain or balance? Short answer, no. However, I found Mayo in Rochester, MN to be more of a place to get answers and then follow up with your own neurologist or physical therapist based on their findings. They did tests on me to give me a conclusive answer on what I had but they could not give me the why. They did make a suggestion of balance therapy which I did as a follow up. The testing was outstanding!! Ed

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