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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@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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Hello Mary, I have always wondered if a dermatologist would be the one to go to because I believe they do more biopsies than any other specialty and I bet would likely know exactly where to do them to diagnose neuropathy. Just a thought. Hope it all works out for you! Blessings, Sunny flower. 😊

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@lois6524

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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Yup, I assisted in a whole lot of them and have had several myself. Very simple and very quick. Not much pain at all. The worst of it is in getting numbed up but if you ask them to infuse the lidocaine very, very slowly, that should help make it less painful. It is not so much the needle that hurts rather the stretching of tissue and pressure from the fluid being infused. It has worked for me to ask them to do it super slow. Hope that helps. Take good care and many blessings, Sunny flower

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@maryflorida

Surgery??!! No way. It's really not much more than a blood test. The nurse gave me a numbing shot, so I didn't even feel the extraction that was done in the exam room where I usually see the doctor.

I looked online for an explanation of my test results, and came across websites that tell and show precisely where the biopsy must be done. So any neurologist should know where those locations are. You could show your doctor the link, but if he doesn't know that, anything he says would be suspect. It's one of the most basic tests to diagnose sfpn, and gives definitive answers.

As others have said, the test is a brief, 15 minute procedure, with little to no residual effect. Perhaps you could look at your neurologist's credentials to see if he is qualified to treat sfpn. And anytime I'm going to see a new doctor, I look for their reviews. I know of 3 trusted review websites. Vitals.com is one I use. I can't pull up the names of the other 2, but I'll see if I can look in my notes on my phone without losing what I've written so far. I think one of them is googlescripts.com, but I'll check on it.

In case this post, which I'm writing on my phone, vanishes, I'll send you want I've written.

Jim

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@maryflorida I was wrong. A review site is lifescripts.com, and the other is googlescholar.com.

I hope that you persist in finding a knowledgeable doctor. I understand first hand how hard persistence can be when you don't feel well. Depression exhibits itself in feeling that it's not worth the effort, sometimes because it makes us feel that WE aren't worth it, and that it's hopeless. But you are worth it, and it's not hopeless. There are many great doctors out there.

And if a surgeon doesn't know the precise locations for the biopsies, run the other direction.

Jim

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@johnbishop Thank you for the zoom suggestion to be able to click on the heart instead of the flag.

And I read your weight loss story. Congratulations.

Jim

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@artscaping

@maryflorida, I sure do understand your point of view. In addition to your questions about the purpose of the skin biopsy, may I add these. With the skin biopsy as proof, you never have to say that you haven’t had the test. Otherwise, you may have to respond to “Why not?” It legitimizes your statements and let’s folks know you and your clinician have done the homework and now have authenticity on your side. I am not suggesting that it’s a battlefield out there. I am saying that “knowledge is power”.

Some clinicians and providers don’t know a lot about SFN and so might not include it in a diagnosis summary. Here’s another example. If you are referred to a therapist for MFR — Myofascial Release, knowing the type of neuropathy can be quite important. Just today, my MFR therapist checked my feet and hands because I was suffering from the ice blocks again. She did a good job of trying to get the SFN pain/cold under control. My neurologist felt it might be the last trick in his bag but he didn’t want to go any further until he had the test results.

I am trying to think of a similar situation in the world of your kind of therapy. Help me. Can you think of one?

Now to the bottom line. If your health insurance is standing in the way........let me know because I will help you with the $. If your neurologist is standing in the way, I would find another one.

My very best and I will be here for you.

May you have happiness and the causes of happiness.
Chris

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John, would there be a neurologist at Mayo to do the skin punch for me? Mayo is not in my insurance network but the registrar at Mayo said I can go just to pay the out-of-network rate. Just wanting to know and not waste time and money. My dear husband was at Mayo last week four days and they take good care of him, but I keep forgetting to get an appointment and not sure who there does the biopsy. Jacksonville.

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@maryflorida

John, would there be a neurologist at Mayo to do the skin punch for me? Mayo is not in my insurance network but the registrar at Mayo said I can go just to pay the out-of-network rate. Just wanting to know and not waste time and money. My dear husband was at Mayo last week four days and they take good care of him, but I keep forgetting to get an appointment and not sure who there does the biopsy. Jacksonville.

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Hi Mary @maryflorida, If you would like to seek help from Mayo Clinic, I think you would just need to contact one of the appointment offices and explain your situation. Here's the contact information which includes the numbers for Minnesota, Arizona and Florida: http://mayocl.in/1mtmR63.

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@maryflorida

I saw my PCP yesterday and asked him to refer me to a neurologist for the test. He said it is not really necessary. The rheumatologist said I have fibromyalgia, based on pain all over my body. Then the PCP agreed with that diagnosis, but when I told him about my icy feet and pain going up my legs, he said that is definitely neuropathy. So, no referral, but only symptomatic diagnoses. My insurance is a Medicare PPO which previously did not need a referral but the last two specialists seemed to need my PCP's referral. (United Health Care AARP Medicare) Bottom line: the Primary doctor said that there is no cure so they just follow the pain and try to deal with it. If you were me, would you want to get biopsy or just let it ride? Thanks.

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@maryflorida , if I were you I think I would find another PCP. You primary doctor should never refuse to give you a referral if you request to see a specialist. The Neurologist will be more up to date on current treatments that your PCP won’t know about. My PCP was happy to refer me to a neurologist because he knew he wasn’t the specialist. Only when I went to the neurologist did I get the true help that I needed and was diagnosed with a disease that my PCP has never even heard of. My recommendation is get to a neurologist, whatever it takes to do that.

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Ok I am going to do that. My pcp is very nice, but I feel like I have to make all the decisions. If I trust him and I have, then he sends me to a rheumatologist who knew nothing of skin biopsies. I wish my insurance covered Mayo. Does anyone know which medicare insurance is accepted at Mayo?

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@johnbishop

Hi Mary @maryflorida, If you would like to seek help from Mayo Clinic, I think you would just need to contact one of the appointment offices and explain your situation. Here's the contact information which includes the numbers for Minnesota, Arizona and Florida: http://mayocl.in/1mtmR63.

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Thanks. I was at Mayo last week (4 times) with my husband. The registrar said for me to contact my insurance company to see what they'll cover. Unfortunately, family matters came first (as usual) so I forgot. I'll call them Monday.

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