1. < Neuropathy

Nerve Conduction Study: Risk vs. Reward

Posted by robtlhughes @robtlhughes, May 25, 2020

I’ve been diagnosed with polyneuropathy for a year and a half and started noticing symptoms a year before that. I’m 78 and in generally good health except for some (so-far) minor lung issues.

My most noticeable symptoms are odd/sensitivity/numbness/freezing/burning sensations occurring mostly at night that began on the soles of both feet and, over a year, have crept up to both knees. In the most recent months, my legs have gotten much weaker, despite strengthening exercises and walking. I take gabapentin which does nothing for these symptoms, but seems to help with arthritis and sleeping.

I have a follow-up appointment in July a highly respected teaching hospital about eight hours from my home. The neurologist thinks another nerve conduction etc. study is in order.

I’ll have to spend at least one night on the road, probably two. One hand, I’m concerned about the virus, particularly since my wife has serious lung issues. Also, from what I read here, on Dr. Google and elsewhere, there’s really not much can be done about my condition. I’m already exercising and trying to maintain my balance with tai chi and other therapist-recommended practices (toe-heel etc.)

On the other hand, maybe the doctor has a trick up his sleeve.

Should I make the trip? Thanks.

Interested in more discussions like this? Go to the Neuropathy Support Group.

cceberk1942 | @cceberk1942 | May 31, 2020
In reply to @johnbishop "Hello @robtlhughes, You'll notice that I changed the title of your new discussion so that other..." + (show)
@johnbishop

Hello @robtlhughes, You'll notice that I changed the title of your new discussion so that other members can easily tell what risk vs. reward is referring to at a glance.

I have had the same feelings before I got a referral to a neurologist from my Mayo Clinic primary care doctor. I had mostly numbness and tingling for over 20 years that started in my toes and worked it's way up to just below the knees before I decided to try and get a diagnosis. The neurologist ordered a few tests including an EMG before I met with him. I had the same apprehension that you have...so they do the test and find out I have nerve damage then what. My fear was the answer was the same that my primary care doctor told me 20 years earlier when I asked about the numbness and tingling in my toes. He told me they could run some tests to see if I have nerve damage and when I asked if there is nerve damage what can you do? The answer was nothing so I said why do the tests and lived with it over the years until I just needed to know. My Mayo neurologist diagnosed me with idiopathic small fiber peripheral neuropathy and said that there were no medications or topical treatments that would help with numbness. They can only treat the pain. It really wasn't what I wanted to hear but it started me on my journey of becoming a better advocate for my health and learning as much as I can about the condition.

My gut feel is that you have the same feelings and a need to know. The decision is yours but I would say your glass is half full, go for it.

@jeffrapp, @rwinney, @jimhd, and @artscaping may be able to share their thoughts with you. Good luck whatever you decide.

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Try Lyrica

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Mentor
Jim, Volunteer Mentor | @jimhd | Jun 1, 2020
In reply to @cceberk1942 "Try Lyrica" + (show)
@cceberk1942

Try Lyrica

Jump to this post

@cceberk1942 Lyrica is a great medication for many people. A few years ago I was taking it, working my way to full dosage, and it was the first medication that helped my neuropathy pain, after trying many others. Unfortunately the side effects landed me in the hospital for a few days. Bummer!

I echo what @jeffrapp said. It sounds like he and I are on parallel paths.

Jim

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cceberk1942 | @cceberk1942 | Jun 2, 2020

What were your side effects?

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Mentor
Jim, Volunteer Mentor | @jimhd | Jun 3, 2020

@cceberk1942

That morning we drove to the city (50 miles from home) for an appointment with our financial advisor, and I asked what seemed to me was a reasonable question. He and my wife said that this wasn't the best time to discuss that. I don't remember what my question was. Then we went to lunch and I couldn't eat or drink. I felt drained. My wife did the driving on the way home, and I would start a sentence, but couldn't complete it. I was becoming more and more incoherent, so we went to the ER. I couldn't walk or answer any questions. When my wife told them that I might have had a stroke, things moved along much more quickly. They wired me to a heart monitor. And then I found out how quickly people responded when my heart rate doubled. They were all set up to shock me when my pulse jumped back down to normal. I was admitted for a couple of nights, and after some detective work, the staff thought that I was having a bad reaction to Lyrica. As soon as I stopped taking it I started getting back to myself.

End of Lyrica.

Jim

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1 reply
cceberk1942 | @cceberk1942 | Jun 3, 2020
In reply to @cceberk1942 "I feel two things to try. One is Lyrica which will definitely help the pain and..." + (show)
@cceberk1942

I feel two things to try. One is Lyrica which will definitely help the pain and maybe the numbness and secondly a stem cell treatment

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Tell me more about a stem cell treatment. I have a balance problem caused by no nerve transmission from the big toe of my right foot which I suspect is blocked off in my lower back

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cceberk1942 | @cceberk1942 | Jun 3, 2020
In reply to @jimhd "@cceberk1942 That morning we drove to the city (50 miles from home) for an appointment with..." + (show)
@jimhd

@cceberk1942

That morning we drove to the city (50 miles from home) for an appointment with our financial advisor, and I asked what seemed to me was a reasonable question. He and my wife said that this wasn't the best time to discuss that. I don't remember what my question was. Then we went to lunch and I couldn't eat or drink. I felt drained. My wife did the driving on the way home, and I would start a sentence, but couldn't complete it. I was becoming more and more incoherent, so we went to the ER. I couldn't walk or answer any questions. When my wife told them that I might have had a stroke, things moved along much more quickly. They wired me to a heart monitor. And then I found out how quickly people responded when my heart rate doubled. They were all set up to shock me when my pulse jumped back down to normal. I was admitted for a couple of nights, and after some detective work, the staff thought that I was having a bad reaction to Lyrica. As soon as I stopped taking it I started getting back to myself.

End of Lyrica.

Jim

Jump to this post

I once had a reaction to Lyrica similar to yours. I was taking the maximum dose and accidentally took a double dose. I participated in the original research studies for many years and it is a great drug. I am not at all afraid to take it again and after taking it for about seven years went off it and my symptoms did not return. I think it may help some nerves to heal

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