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.

@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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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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@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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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

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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@rwinney

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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@rwinney I am very troubled to hear this Rachel. Not only about your issues with Medicare hassling you about your meds but these job issues caused by the lockdown (I never say by the virus because I believe it was the gov't stupidity with their handling of this whole thing that is to blame for the problems working people and small businesses are having. End of political speech.) I am upset that the little pencil pushers make such asinine decisions in cases such as yours and Jim's.

I am a true blue ignoramus about insurance. Linda has, fortunately, managed to skate through all of her ordeal with no lasting ins. hassles (there was one time I thought I was going to have to cough up a surprise $8000 after a surgery but a nice lady found a way to solve that.) And it helps she does not take any prescription meds. My very heartfelt sympathy for you and your husband for this ordeal you face, both the health issues and the dumb things Medicare does to make your life even harder, and the difficulties that have been piled on by the lockdown. Fortunately for you, you are in possession of an indomitable will, as evidenced by everything you do and say in this forum. My best always Rachel, Hank

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@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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Hi @maryflorida What a weird thing for them to do. You probably read plenty already, but for my own edification I went to the Mayo website about skin punch biopsies and it says "A skin biopsy typically takes about 15 minutes total, including the preparation time, dressing the wound and instructions for at-home care." And when you read about the procedure it sounds very simple. It does not sound like it should in any way be treated like a full blown surgery. Unless I am missing something and what you are getting is something different. I am with Rachel, I think I'd look for another doctor to discuss this with. Sheesh, just reading about the whole process as you have been experiencing it is exhausting! Wishing you luck moving forward, Hank

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yes, a skin biopsy is a very quick thing — it is NOT a surgery procedure, like if they do a liver biopsy or a breast biopsy — the tech takes a small device and taps it on your skin and takes a piece of skin that is about 1/8 inch or less — find another doctor!!

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@jesfactsmon

@rwinney I am very troubled to hear this Rachel. Not only about your issues with Medicare hassling you about your meds but these job issues caused by the lockdown (I never say by the virus because I believe it was the gov't stupidity with their handling of this whole thing that is to blame for the problems working people and small businesses are having. End of political speech.) I am upset that the little pencil pushers make such asinine decisions in cases such as yours and Jim's.

I am a true blue ignoramus about insurance. Linda has, fortunately, managed to skate through all of her ordeal with no lasting ins. hassles (there was one time I thought I was going to have to cough up a surprise $8000 after a surgery but a nice lady found a way to solve that.) And it helps she does not take any prescription meds. My very heartfelt sympathy for you and your husband for this ordeal you face, both the health issues and the dumb things Medicare does to make your life even harder, and the difficulties that have been piled on by the lockdown. Fortunately for you, you are in possession of an indomitable will, as evidenced by everything you do and say in this forum. My best always Rachel, Hank

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@jesfactsmon Thank you for your support Hank. 👍🏻

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@jesfactsmon

Hi @maryflorida What a weird thing for them to do. You probably read plenty already, but for my own edification I went to the Mayo website about skin punch biopsies and it says "A skin biopsy typically takes about 15 minutes total, including the preparation time, dressing the wound and instructions for at-home care." And when you read about the procedure it sounds very simple. It does not sound like it should in any way be treated like a full blown surgery. Unless I am missing something and what you are getting is something different. I am with Rachel, I think I'd look for another doctor to discuss this with. Sheesh, just reading about the whole process as you have been experiencing it is exhausting! Wishing you luck moving forward, Hank

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Yes, the procedure is all of 15 min. Mine done by my neurologist in his office on the table. Scoop, clean, bandaid. That easy. Time to find another Dr @maryflorida, if it's worth it to you of course.

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@jesfactsmon

@rwinney I am very troubled to hear this Rachel. Not only about your issues with Medicare hassling you about your meds but these job issues caused by the lockdown (I never say by the virus because I believe it was the gov't stupidity with their handling of this whole thing that is to blame for the problems working people and small businesses are having. End of political speech.) I am upset that the little pencil pushers make such asinine decisions in cases such as yours and Jim's.

I am a true blue ignoramus about insurance. Linda has, fortunately, managed to skate through all of her ordeal with no lasting ins. hassles (there was one time I thought I was going to have to cough up a surprise $8000 after a surgery but a nice lady found a way to solve that.) And it helps she does not take any prescription meds. My very heartfelt sympathy for you and your husband for this ordeal you face, both the health issues and the dumb things Medicare does to make your life even harder, and the difficulties that have been piled on by the lockdown. Fortunately for you, you are in possession of an indomitable will, as evidenced by everything you do and say in this forum. My best always Rachel, Hank

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In Medicare's defense, all of my meds, procedures,
infusion have been covered thus far but, not without a little extra work by my doc.

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@sunnyflower

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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@sunnyflower It doesnt appear that I can attach to a private message so, here you go! Hoping its helpful for all to see who may be curious about skin punch biopsy.

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@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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Hi @maryflorida, You will notice that we merged your new discussion into this discussion you created earlier so that you can continue the discussion thread and other members will be able to respond. I would agree with @rwinney and others that I would seek a neurologist at a major teaching hospital, university or the Mayo Clinic if that is an option. I'm no medical expert but I don't believe a surgeon would typically do a skin punch biopsy. Here's more info from the Mayo Clinic – https://www.mayoclinic.org/tests-procedures/skin-biopsy/multimedia/punch-biopsy/img-20005764

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