Nerve Conduction Study: Risk vs. Reward

Posted by robtlhughes @robtlhughes, Mon, May 25 10:40am

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.

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.

REPLY
@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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Many thanks for your insights and helpful post. The nerve conduction study and whatever I had 15 months ago left no doubt I have it. (Actually the test was interesting. The tech let me watch his monitor to see if there were three identical wave forms for each place he shocked me.) My concern about driving to UPMC in Pittsburgh is the corona-virus. If that wasn't a risk, I'd go.

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@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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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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@robtlhughes

Many thanks for your insights and helpful post. The nerve conduction study and whatever I had 15 months ago left no doubt I have it. (Actually the test was interesting. The tech let me watch his monitor to see if there were three identical wave forms for each place he shocked me.) My concern about driving to UPMC in Pittsburgh is the corona-virus. If that wasn't a risk, I'd go.

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@robtlhughes my 2 cents: Given your worry about covid and the chance of infecting your wife if you caught it, I would probably not go if it were me. Especially given your ages and the lung issues you guys are dealing with. Seems risky.

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Hi @robtlhughes
I understand your reluctance to go for the tests, although on balance, I think I would go.
The real issue is what is your final diagnosis. You didn't mention whether you've had other tests. You may actually have a treatable problem which is causing your PN. If so, the sooner you get treatment the better. That may be reason enough for your trip. However, be aware of the fact that a substantial percentage of people with PN are of unknown cause (like me).
As to specific treatment for the PN, you sound like you are aware of the fact that it is problematic, and often less than satisfactory.
I disagree strongly with the poster above who advises that "Lyrica will "definitely help the pain", and that you should try stem cell treatment. Lyrica may help with the pain, not definitely. Furthermore you are already on gabapentin, which is very much like Lyrica. It is important that you are on the proper dose, which the neurologists can help you with. As for stem cells, they are not yet approved for PN (or almost anything else), and trials have been disappointing.
Good luck!

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@jeffrapp

Hi @robtlhughes
I understand your reluctance to go for the tests, although on balance, I think I would go.
The real issue is what is your final diagnosis. You didn't mention whether you've had other tests. You may actually have a treatable problem which is causing your PN. If so, the sooner you get treatment the better. That may be reason enough for your trip. However, be aware of the fact that a substantial percentage of people with PN are of unknown cause (like me).
As to specific treatment for the PN, you sound like you are aware of the fact that it is problematic, and often less than satisfactory.
I disagree strongly with the poster above who advises that "Lyrica will "definitely help the pain", and that you should try stem cell treatment. Lyrica may help with the pain, not definitely. Furthermore you are already on gabapentin, which is very much like Lyrica. It is important that you are on the proper dose, which the neurologists can help you with. As for stem cells, they are not yet approved for PN (or almost anything else), and trials have been disappointing.
Good luck!

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Thanks for getting back. Those tests would all be repeats, mainly, I think, to see how fast it's progressing. Pretty fast, in my opinion. The diagnosis has been confirmed by two neurologists. I guess I hope three might be the charm, and a world-class specialist could pull a rabbit out of his hat. It's a long-shot and a risk I don't think I'm quite ready to take.

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@robtlhughes

Thanks for getting back. Those tests would all be repeats, mainly, I think, to see how fast it's progressing. Pretty fast, in my opinion. The diagnosis has been confirmed by two neurologists. I guess I hope three might be the charm, and a world-class specialist could pull a rabbit out of his hat. It's a long-shot and a risk I don't think I'm quite ready to take.

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@robtlhughes Hello there. I'm sorry for your dilemma. When I'm torn, sometimes a good ole pen to paper works. List pros vs. cons so you can visually see what weighs out. Just because you make one decision now does not mean you can not change your mind later. Best of luck.
Rachel

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@rwinney

@robtlhughes Hello there. I'm sorry for your dilemma. When I'm torn, sometimes a good ole pen to paper works. List pros vs. cons so you can visually see what weighs out. Just because you make one decision now does not mean you can not change your mind later. Best of luck.
Rachel

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Thanks. There are very few pros (eg, confirm what I already know) and a whole lot of cons. I'll probably stay home.

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@robtlhughes

Thanks. There are very few pros (eg, confirm what I already know) and a whole lot of cons. I'll probably stay home.

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@robtlhughes I'm one of those people who have to know everything about my health. I drove to Portland Oregon to try to learn more about my neuropathy. It's another excellent teaching hospital, where I could have tests that my local neurologist couldn't do. I came away from that knowing very little more than I already knew. But I did learn a couple of things that were helpful. They found genetic markers for neuropathy – which was kind of obvious, knowing that my father and my 5 siblings all had/have it. The top doc did say that I'm in the early stages of autonomic neuropathy. So, the time and effort and expense were worth something. Knowing about AN has been helpful as I see various specialists – the ophthalmologist has a better understanding of my double vision, the urologist sees the effects of AN in my urinary urgency issues and ED, the speech therapist can attribute my esophageal dysmotility to AN, and the list goes on.

For me, knowledge is power. It's astounding how much information is out there, just a click away. We can Google our symptoms or send them to our doctor's portal and find out what's going on without getting up from our recliner. Not to mention being able to Zoom with our children and grandchildren any time we want to. That's especially nice when our kids live so far away, and even more so during this pandemic.

Some things can wait. Talking with a super specialist will be just as helpful a few months from now when it will be safer to travel.

Jim

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Many thanks for sharing your experience. I think I know all I need to know for now. I'll be better off continuing to shelter, working on balance and strength instead of sitting in front of the computer to avoid it. Pittsburgh can wait. Thanks again.

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@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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In reply to @cceberk1942 "Try Lyrica" + (show)
@cceberk1942

Try Lyrica

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@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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What were your side effects?

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@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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@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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