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 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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@rwinney

@maryflorida Your neurologist can and should do a skin punch biopsy as neuropathy is in their field. However, make sure your neurologist is knowledgeable of the various types of neuropathy, including Small Fiber Neuropathy. It is still widely unknown or understood by some Drs. My neurologist did my biopsy right in his office. It's pretty quick and easy. Good luck! 🍀

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Hello. I typed a lot then it disappeared. Please tell me how to get to the beginning of the skin biopsy discussion. For years, even before I learned they are doing them I have wished I could have one! Thx so much! I am not proficient in getting around here. Blessings, Sunny

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@sunnyflower

Hello. I typed a lot then it disappeared. Please tell me how to get to the beginning of the skin biopsy discussion. For years, even before I learned they are doing them I have wished I could have one! Thx so much! I am not proficient in getting around here. Blessings, Sunny

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@sunnyflower Hi there. 😊 Doesnt it drive you crazy when that happens!? I've managed to need to restart a post many times. Sunny, forgive me for not remembering but, can you remind me of your circumstance? I'm assuming you have neuropathy. If you've been told you have neuropathy based on clinical exam but have not had a confirming skin punch biopsy test, then you may approach with your neurologist. It seems some neurologists like to decide for the patient. I disagree. As a patient, you have every right to request a test to help dissect your neuropathy and bring you a more specific path forward on how to treat the type of neuropathy. Insurance may be a question regarding coverage. In my case, because I am on social security disability, my skin punch biopsy test helped prove my case and cause. Many folks who are diagnosed with fibromyalgia, actually have Small Fiber Neuropathy as proven by a skin punch biopsy. It helps for clarity. If your Dr does not oblige, I would move on and find a Dr who takes more pride and understanding in your health. Good luck! 🍀
Best wishes,
Rachel

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@sunnyflower

Hello. I typed a lot then it disappeared. Please tell me how to get to the beginning of the skin biopsy discussion. For years, even before I learned they are doing them I have wished I could have one! Thx so much! I am not proficient in getting around here. Blessings, Sunny

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Hi @sunnyflower nice to hear from you again! I remember you from a few months ago. Firstly, you ask about how to get to the beginning of the discussion. There is a handy button you can click on just above the first post that says "oldest to newest". That puts the very first post of the discussion right on the same page you are on. If you change it to "newest to oldest" it will change so the most recent post (the newest post) is right on the page you are on. It seems like that is what you are asking, forgive me if I have misunderstood. I hope you are well and hope you get your questions answered. Best to you, Hank

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@jesfactsmon

Hi @sunnyflower nice to hear from you again! I remember you from a few months ago. Firstly, you ask about how to get to the beginning of the discussion. There is a handy button you can click on just above the first post that says "oldest to newest". That puts the very first post of the discussion right on the same page you are on. If you change it to "newest to oldest" it will change so the most recent post (the newest post) is right on the page you are on. It seems like that is what you are asking, forgive me if I have misunderstood. I hope you are well and hope you get your questions answered. Best to you, Hank

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Hahaha...nice save here Hank. I see I totally missed the question at hand from @sunnyflower. Thanks for for the rescue!

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@jesfactsmon

Hi @sunnyflower nice to hear from you again! I remember you from a few months ago. Firstly, you ask about how to get to the beginning of the discussion. There is a handy button you can click on just above the first post that says "oldest to newest". That puts the very first post of the discussion right on the same page you are on. If you change it to "newest to oldest" it will change so the most recent post (the newest post) is right on the page you are on. It seems like that is what you are asking, forgive me if I have misunderstood. I hope you are well and hope you get your questions answered. Best to you, Hank

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Thx so much! How do I know which is the first post? Warm regards, Sunny

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@sunnyflower

Thx so much! How do I know which is the first post? Warm regards, Sunny

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When you set "oldest to newest" it will be the one at the top of the page you are on. Hope you are feeling not too badly these days @sunnyflower. I remember you had been in some terrible pain. How are you doing lately? Hank

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You, without doubt, need to consult the best Neurologist in the business. You will undergo many , many tests, including fMRI for multiple scans of your brain, a myriad of blood tests, 27 in my case, and of course skin puncture electric probes. The tests will prove exactly what your problem is. It is all painless? Book in asap for your own peace of mind. If it is Peripheral-neuropathy, that's ok, and not the end of the world, Good luck and go for IT!

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Barry, but what can be done for neuropathy plus fibromyalgia? My PCP said all that can be done is pain control.. ??

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@maryflorida

Barry, but what can be done for neuropathy plus fibromyalgia? My PCP said all that can be done is pain control.. ??

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@maryflorida Hi there, my wife was diagnosed with fibromyalgia around 1990. The neuropathy came in 2014. The way the fibro manifested was that when she overdid physically her muscles would become very painful. She would move around the house like a 95 year old person is what we always said. You know, like she could only move very slowly and stiffly and painfully. And that would last maybe a day if she stopped moving. So she learned to cool it on the overdoing. Not easy for her, she has always been a chronic overdoer. But through the years she has learned what the consequences are to overdoing.

As I said, she also has neuropathy, burning feet and sometimes calves from chemo. I would say currently about 70% or more of her pain is neuropathy and 30% is fibro, migraines and tinnitus. Actually the fibro seems like the least of her pain as long as, as I said before, she doesn't overdo physically. She has never taken pain killers, except marijuana occasionally. She is allergic to all OTC pain killers, i.e. no aspirin, advil, tylenol, etc. So my point is, she lives with the peripheral neuropathy pain, migraines and tinnitus. For the fibro she pretty much tries her best to "do" but not "overdo".

May I ask you, how does your fibro manifest and when? Can you describe how a flareup occurs in your case? How long do they last and how does the fibro pain compare to the PN pain?

Hank

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