1. < Neuropathy

Nerve biopsy test: Is it done by a neurologist or rheumatologist?

Posted by maryflorida @maryflorida, Aug 4, 2020

What kind of doctor do I see for the nerve biopsy test? My PCP sent me to a rheumatologist for a diagnosis. She feels it is fibromyalgia but prior doctor in Wash. state said it is neuropathy. She won't arrange for the biopsy. Which kind of doctor can finally give me a diagnosis or is she right? All she is offering is amitriptyline for pain. I do take norco too, but my PCP would like me to get off that. I need advice.

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sunnyflower | @sunnyflower | Aug 20, 2020
In reply to @lioness "@rwinney My rheumatologist didn't know about this so now she is informed . Good for you..." + (show)
@lioness

@rwinney My rheumatologist didn't know about this so now she is informed . Good for you I always go to heat and ice , Epsom salts and whatever works right !

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Not sure if I said this before so apologize if this is a repeat, but it is my understanding that rheumatologist and neurologist are telling each other that each other should be managing neuropathy and fibromyalgia. I don't know if it's just that they don't want to deal with it, don't have the answers, know that there aren't answers, or whatever but for so long fibromyalgia belong to Rheumatology and neuropathy to neurologist but that could be changing soon. I just wish someone would own it! Sunny flower

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sunnyflower | @sunnyflower | Aug 20, 2020
In reply to @rwinney "@sunnyflower Will send tomorrow...hands bad." + (show)
@rwinney

@sunnyflower Will send tomorrow...hands bad.

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No hurry, take your time. I understand. I can't believe I had to reschedule a doctor's appointment today bc of pain. I NEVER do that! Had my 3rd esophageal stretch under general anesthesia yesterday and guess I'm not done recovering. Not one of my most brilliant moves! Peace, Sunnyflower

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1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Aug 21, 2020

@sunnyflower @lorirenee1 @rwinney I asked my neurologist to repeat tests that were done several years ago. He first did a nerve conduction. The original test showed near normal ranges for superficial pereneal sensory and motor, and for median sensory and motor, and radial sensory. The redo last month showed that all of the ranges tested were 50% reduced! He was not happy to see that. Neither was I. Then, 4 weeks ago he did skin punch biopsies in my foot, calf and thigh. He gave me the results on Tuesday, again not good. I don't know what the numbers refer to exactly, but the baseline tests were nearly normal 5 years ago. This is a nerve fiber density test. Normal for the foot is greater than 3.0, I'm 0.0. Normal for the calf is greater than 2.1, I'm 0.4. And normal for the thigh is greater than 6.0, I'm 0.1.

These numbers indicate sfn. No news there. But he also seemed to be saying that it indicates autonomic neuropathy, as well. In his notes he wrote that double vision, swallowing problems, bladder problems and GI function are being affected, if not totally caused, by AN. (At the end of each appointment he gives me a copy of the notes he wrote, detailing everything we talked about.)

I asked him to redo the tests, so I guess I shouldn't be upset by the results, but it's definitely taking a toll on my depression and anxiety levels. I talked with my therapist yesterday about my level of depression, and he pushed me to discuss it with my wife, which I haven't done yet.

I received a letter from my supplemental insurance that Medicare is asking for my doctor's authorization to determine if they will continue to cover my morphine sulfate contin that I've been taking for over 7 years. My understanding is that they don't think it's indicated for neuropathy pain. I don't know where it stands right now, but it's definitely in the mix of how I'm feeling mentally. I don't know how I'll deal with it if it's denied. I don't want to think what effect it will have on my pain if I have to stop taking it. The neurologist told me that he will include in his notes that morphine is keeping my pain at a level I can endure. The therapist said he would write a letter to my pcp. I need to write down what I want him to say, and text it to him. He's concerned about what happens when my depression worsens. I think it concerns him more than it does me.

Thanks for reading all the way through. I know my posts are almost always on the long side.

Jim

REPLY
4 replies
phoenix0509 | @phoenix0509 | Aug 21, 2020
In reply to @jimhd "@sunnyflower @lorirenee1 @rwinney I asked my neurologist to repeat tests that were done several years ago...." + (show)
@jimhd

@sunnyflower @lorirenee1 @rwinney I asked my neurologist to repeat tests that were done several years ago. He first did a nerve conduction. The original test showed near normal ranges for superficial pereneal sensory and motor, and for median sensory and motor, and radial sensory. The redo last month showed that all of the ranges tested were 50% reduced! He was not happy to see that. Neither was I. Then, 4 weeks ago he did skin punch biopsies in my foot, calf and thigh. He gave me the results on Tuesday, again not good. I don't know what the numbers refer to exactly, but the baseline tests were nearly normal 5 years ago. This is a nerve fiber density test. Normal for the foot is greater than 3.0, I'm 0.0. Normal for the calf is greater than 2.1, I'm 0.4. And normal for the thigh is greater than 6.0, I'm 0.1.

These numbers indicate sfn. No news there. But he also seemed to be saying that it indicates autonomic neuropathy, as well. In his notes he wrote that double vision, swallowing problems, bladder problems and GI function are being affected, if not totally caused, by AN. (At the end of each appointment he gives me a copy of the notes he wrote, detailing everything we talked about.)

I asked him to redo the tests, so I guess I shouldn't be upset by the results, but it's definitely taking a toll on my depression and anxiety levels. I talked with my therapist yesterday about my level of depression, and he pushed me to discuss it with my wife, which I haven't done yet.

I received a letter from my supplemental insurance that Medicare is asking for my doctor's authorization to determine if they will continue to cover my morphine sulfate contin that I've been taking for over 7 years. My understanding is that they don't think it's indicated for neuropathy pain. I don't know where it stands right now, but it's definitely in the mix of how I'm feeling mentally. I don't know how I'll deal with it if it's denied. I don't want to think what effect it will have on my pain if I have to stop taking it. The neurologist told me that he will include in his notes that morphine is keeping my pain at a level I can endure. The therapist said he would write a letter to my pcp. I need to write down what I want him to say, and text it to him. He's concerned about what happens when my depression worsens. I think it concerns him more than it does me.

Thanks for reading all the way through. I know my posts are almost always on the long side.

Jim

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@jimhd , Thank You for being on the long side. I learn a great deal from you as you share about your condition, your results and the challenges they bring. What helps me is to come up with options. These Options give you a potential alternative path, a solution to pursue when you hit a wall. Enlist the help of others, ie. letting your wife in on your struggles .. Stay the course. Keep the faith. Open up options. and know that you are good enough, tall enough, smart enough,wise enough, to face life each day. Continue to tend to your gardens and play your music and write us often. David

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1 reply
Hank | @jesfactsmon | Aug 21, 2020
In reply to @phoenix0509 "@jimhd , Thank You for being on the long side. I learn a great deal from..." + (show)
@phoenix0509

@jimhd , Thank You for being on the long side. I learn a great deal from you as you share about your condition, your results and the challenges they bring. What helps me is to come up with options. These Options give you a potential alternative path, a solution to pursue when you hit a wall. Enlist the help of others, ie. letting your wife in on your struggles .. Stay the course. Keep the faith. Open up options. and know that you are good enough, tall enough, smart enough,wise enough, to face life each day. Continue to tend to your gardens and play your music and write us often. David

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@jimhd @phoenix0509 Jim, I am in total agreement with the sentiments David expresses. When I see one of your "long" posts, I know I am in for an interesting read. You are an interesting guy with unusual insights, a wonderful attitude and a deeply human side that I find appealing. I have not ever been aware of you writing anything that seemed frivolous, at least to me. I consider you to be one of the folks in this forum who provide a bedrock substrate to the every discussion you weigh in on. So thank-you.

I hope nobody messes with your meds. Don't know anymore to say about that. I don't see how they can take away something that has been working for so long for you. But that's bureaucracy for you. My prayers are with you on this. Please hang in there buddy, you are a good man and I hope you find the strength you need to overcome your depression. God bless my good friend, Hank

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Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 21, 2020
In reply to @jimhd "@sunnyflower @lorirenee1 @rwinney I asked my neurologist to repeat tests that were done several years ago...." + (show)
@jimhd

@sunnyflower @lorirenee1 @rwinney I asked my neurologist to repeat tests that were done several years ago. He first did a nerve conduction. The original test showed near normal ranges for superficial pereneal sensory and motor, and for median sensory and motor, and radial sensory. The redo last month showed that all of the ranges tested were 50% reduced! He was not happy to see that. Neither was I. Then, 4 weeks ago he did skin punch biopsies in my foot, calf and thigh. He gave me the results on Tuesday, again not good. I don't know what the numbers refer to exactly, but the baseline tests were nearly normal 5 years ago. This is a nerve fiber density test. Normal for the foot is greater than 3.0, I'm 0.0. Normal for the calf is greater than 2.1, I'm 0.4. And normal for the thigh is greater than 6.0, I'm 0.1.

These numbers indicate sfn. No news there. But he also seemed to be saying that it indicates autonomic neuropathy, as well. In his notes he wrote that double vision, swallowing problems, bladder problems and GI function are being affected, if not totally caused, by AN. (At the end of each appointment he gives me a copy of the notes he wrote, detailing everything we talked about.)

I asked him to redo the tests, so I guess I shouldn't be upset by the results, but it's definitely taking a toll on my depression and anxiety levels. I talked with my therapist yesterday about my level of depression, and he pushed me to discuss it with my wife, which I haven't done yet.

I received a letter from my supplemental insurance that Medicare is asking for my doctor's authorization to determine if they will continue to cover my morphine sulfate contin that I've been taking for over 7 years. My understanding is that they don't think it's indicated for neuropathy pain. I don't know where it stands right now, but it's definitely in the mix of how I'm feeling mentally. I don't know how I'll deal with it if it's denied. I don't want to think what effect it will have on my pain if I have to stop taking it. The neurologist told me that he will include in his notes that morphine is keeping my pain at a level I can endure. The therapist said he would write a letter to my pcp. I need to write down what I want him to say, and text it to him. He's concerned about what happens when my depression worsens. I think it concerns him more than it does me.

Thanks for reading all the way through. I know my posts are almost always on the long side.

Jim

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@jimhd Hi Jim For you sir, I could write forever but, I'm forced to keep it short due to hand flares. I'm very sorry for the results that prove growing changes in your body. Now you can connect the dots and realize you may have new paths and hurdles but, ones you are fully prepared to tackle. I know this because I hear and have observed your strength, courage, perseverance and never quit attitude from afar. Your mental health may be challenged but, with your faith and loving family, that I hope you will include on your continued journey, I know in my heart that you will push, not give up and be the best version of you you can be. Best of luck my frriend. Many hugs of comfort are sent your way. We are all here for you. ❤
Rachel

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Aug 21, 2020
In reply to @jimhd "@sunnyflower @lorirenee1 @rwinney I asked my neurologist to repeat tests that were done several years ago...." + (show)
@jimhd

@sunnyflower @lorirenee1 @rwinney I asked my neurologist to repeat tests that were done several years ago. He first did a nerve conduction. The original test showed near normal ranges for superficial pereneal sensory and motor, and for median sensory and motor, and radial sensory. The redo last month showed that all of the ranges tested were 50% reduced! He was not happy to see that. Neither was I. Then, 4 weeks ago he did skin punch biopsies in my foot, calf and thigh. He gave me the results on Tuesday, again not good. I don't know what the numbers refer to exactly, but the baseline tests were nearly normal 5 years ago. This is a nerve fiber density test. Normal for the foot is greater than 3.0, I'm 0.0. Normal for the calf is greater than 2.1, I'm 0.4. And normal for the thigh is greater than 6.0, I'm 0.1.

These numbers indicate sfn. No news there. But he also seemed to be saying that it indicates autonomic neuropathy, as well. In his notes he wrote that double vision, swallowing problems, bladder problems and GI function are being affected, if not totally caused, by AN. (At the end of each appointment he gives me a copy of the notes he wrote, detailing everything we talked about.)

I asked him to redo the tests, so I guess I shouldn't be upset by the results, but it's definitely taking a toll on my depression and anxiety levels. I talked with my therapist yesterday about my level of depression, and he pushed me to discuss it with my wife, which I haven't done yet.

I received a letter from my supplemental insurance that Medicare is asking for my doctor's authorization to determine if they will continue to cover my morphine sulfate contin that I've been taking for over 7 years. My understanding is that they don't think it's indicated for neuropathy pain. I don't know where it stands right now, but it's definitely in the mix of how I'm feeling mentally. I don't know how I'll deal with it if it's denied. I don't want to think what effect it will have on my pain if I have to stop taking it. The neurologist told me that he will include in his notes that morphine is keeping my pain at a level I can endure. The therapist said he would write a letter to my pcp. I need to write down what I want him to say, and text it to him. He's concerned about what happens when my depression worsens. I think it concerns him more than it does me.

Thanks for reading all the way through. I know my posts are almost always on the long side.

Jim

Jump to this post

Hi Jim @jimhd, I'm guessing you might already know this but you can file an appeal if Medicare denies the morphine sulfate contin that you've been taking for over 7 years to help with the pain. More info on Medicare.gov - https://www.medicare.gov/claims-appeals/how-do-i-file-an-appeal Hoping they will continue to cover the medication and not cause any additional pain for you.

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 21, 2020
In reply to @johnbishop "Hi Jim @jimhd, I'm guessing you might already know this but you can file an appeal..." + (show)
@johnbishop

Hi Jim @jimhd, I'm guessing you might already know this but you can file an appeal if Medicare denies the morphine sulfate contin that you've been taking for over 7 years to help with the pain. More info on Medicare.gov - https://www.medicare.gov/claims-appeals/how-do-i-file-an-appeal Hoping they will continue to cover the medication and not cause any additional pain for you.

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Great that you bring this up John. I am always fighting/appealing for meds, infusions, my rights to disability, both Medicare and MetLife. It's exhausting but, must be done to secure what we rightfully are due. I don't think may folks on this forum are on employment disability but let me tell you, they are VERY difficult. I was cut off (with no prior warning) from benefits in Feb bc my dr didnt send in paperwork. It took 2 months to appeal and finally get my money back. Tough time to go without income as my husband was unemployed from Covid and I've taken a pay cut being disabled. Now I'm in the midst of another review after just being reinstated in April, then just found out the rules change after 24 months and state that although I cant perform my old jobs duties, they state I can perform some duties, somewhere so they're cutting me off again. This all comes in October while at Mayo. So I'll be dropped again and will need to appeal. It's complete BS and is mind blowing as I have ample proof, evidence and multiple Drs backing me. That will be 3 major hurdles in one year but, I will fight again regardless of its mental and physical drain. No other choice bc of money. Jim - you fight for that medicine if it works and you need it. Screw them!

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1 reply
maryflorida | @maryflorida | Aug 21, 2020

I posted this already. My rheumatologist arranged a nerve biopsy for me at a SURGEON"s office. This surgeon doesn't even know what part of my feet to punch, nor does the neuologist. Yes, I was happy to get scheduled for this, but then they told me it is regular surgery that has to be done in a surgical suite. Lots of $$. I don't think it is worth doing. Years ago I had to have a biopsy on an intimate area of my body.. just a quick do in the doctor's office, scarcely any pain at all. One last try will be to call a neurologist I guess.

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4 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 21, 2020
In reply to @maryflorida "I posted this already. My rheumatologist arranged a nerve biopsy for me at a SURGEON"s office...." + (show)
@maryflorida

I posted this already. My rheumatologist arranged a nerve biopsy for me at a SURGEON"s office. This surgeon doesn't even know what part of my feet to punch, nor does the neuologist. Yes, I was happy to get scheduled for this, but then they told me it is regular surgery that has to be done in a surgical suite. Lots of $$. I don't think it is worth doing. Years ago I had to have a biopsy on an intimate area of my body.. just a quick do in the doctor's office, scarcely any pain at all. One last try will be to call a neurologist I guess.

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@maryflorida My suggestion is to find a competent Dr who understands, knows what to do and has experience. It may mean searching out of your area if you dont have a medical university or college nearby. Good luck!

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