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

Posted by maryflorida @maryflorida, Aug 4 6:34am

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.

@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 @maryflorida, Did your prior doctor who said it was neuropathy do any testing or did they just think it was neuropathy? Sometimes doctors are not in agreement and I can understand how you must feel since you are the one with the pain. Here are some articles on the topic that may help you in a discussion with your doctor.

Fibromyalgia as a Neuropathic Pain Disorder: The Link to Small Fiber Neuropathy: https://www.practicalpainmanagement.com/pain/myofascial/fibromyalgia-neuropathic-pain-disorder-link-small-fiber-neuropathy

Mayo Clnic News Network – Mayo Clinic Q and A: Understanding myofascial pain syndrome and fibromyalgia: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-understanding-myofascial-pain-syndrome-and-fibromyalgia/

Mayo Clinic Newsfeed – Understanding myofascial pain syndrome and fibromyalgia: https://connect.mayoclinic.org/page/adult-pain-medicine/newsfeed-post/health-answers-understanding-myofascial-pain-syndrome-and-fibromyalgia/

Have you considered getting a second opinion for your diagnosis?

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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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Oh gee. She said she would arrange for a surgeon to do this, and after six weeks, she has not.

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That's ok. @johnbishop has provided you some great links to research. No two doctors are built the same.

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@maryflorida, You will notice that we changed the title of your discussion a little to help members who may have the same question. Thanks for posting the discussion.

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@johnbishop

@maryflorida, You will notice that we changed the title of your discussion a little to help members who may have the same question. Thanks for posting the discussion.

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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.

me

Liked by rwinney, HankB

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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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Hi Mary @maryflorida, I might not be the right person to answer your question. I am the kind of person that likes to know what's wrong with me but I also waited 20+ years before seeking a diagnosis and getting tests to determine whether or not I had nerve damage. The reason I waited was because I was told that if it is nerve damage there was nothing they could do for me since I only have numbness. So you can imagine how I felt when the neurologist examined me and reviewed the nerve conduction study and told me there were no treatments that help with the numbness and to just let him know when it gets worse. I'm still glad I finally got the diagnosis of idiopathic small fiber peripheral neuropathy. The diagnosis got me to think about alternative treatments, supplements and therapies which is how I found Connect.

In my humble opinion, the primary doctor is correct that there is no cure for neuropathy and they only treat the symptoms to remove or lessen the pain. Also, you can help yourself by continuing to do your own research and learn as much as you can about what is available for treating your symptoms and what others have found that helps them.

@rwinney, @artscaping, @jesfactsmon and others may be able to offer different viewpoints or suggestions. As hard as it is, one of the best things you can do is to try and maintain a positive attitude and take it one day at a time which I think you are already doing.

What do you consider that hardest symptom to deal with?

Liked by rwinney, HankB

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@maryflorida Hi there. What does your gut tell you? Are you a person who likes proof and evidence? If so, I'd go for the skin biopsy. My neuro never gave the option. He felt strong about my diagnosis being Small Fiber Neuropathy but, was thorough in leaving no stone unturned.

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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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Good evening @maryflorida. It’s me again. How are you this evening. I want to try to help determine which clinician’s nurse is going to take two minutes to grab a bit of skin from your ankle or some other part of the body and get it ready to mail to one of the labs that does the analysis of this special skin biopsy. The goal is to determine what percentage of the sample is made up of healthy, functioning nerves. For example, mine was somewhere around -.09. The average for a female of about my age and weight,etc. is +9.5 or something like that. I don’t have the report right now yet can probably find it tomorrow.

The lower the percentage of functioning nerves, the more likely you will have pain with the SFN. The only thing I can figure out is that the analysis is a bit spendy and insurance may have dictated the providers who can qualify to submit them.

I just may have had a different PPO at that time.

I will also share with you that my neurologist did first send me to a rheumatologist for her opinion. She said that all this neuropathy is just fibromyalgia. In order to receive treatment I would have to give up my medications. I discussed her feedback with the neurologist and together we decided to stay with where we were and be attentive to any reactions or additional symptoms. This is your decision @maryflorida and you have a right to know what is going on.

May you be free of pain and suffering.
Chris

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@artscaping

Good evening @maryflorida. It’s me again. How are you this evening. I want to try to help determine which clinician’s nurse is going to take two minutes to grab a bit of skin from your ankle or some other part of the body and get it ready to mail to one of the labs that does the analysis of this special skin biopsy. The goal is to determine what percentage of the sample is made up of healthy, functioning nerves. For example, mine was somewhere around -.09. The average for a female of about my age and weight,etc. is +9.5 or something like that. I don’t have the report right now yet can probably find it tomorrow.

The lower the percentage of functioning nerves, the more likely you will have pain with the SFN. The only thing I can figure out is that the analysis is a bit spendy and insurance may have dictated the providers who can qualify to submit them.

I just may have had a different PPO at that time.

I will also share with you that my neurologist did first send me to a rheumatologist for her opinion. She said that all this neuropathy is just fibromyalgia. In order to receive treatment I would have to give up my medications. I discussed her feedback with the neurologist and together we decided to stay with where we were and be attentive to any reactions or additional symptoms. This is your decision @maryflorida and you have a right to know what is going on.

May you be free of pain and suffering.
Chris

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At this point, I am not sure it is vital for me to have the biopsy. My husband is actually going to Mayo Clinic in Jax this coming Monday for a biopsy since he had a kidney transplant there two years ago. Maybe I can find out if they can just do this. Since the only treatment is pain relief, is it necessary to have the biopsy? Or if I don't have it, will the government deny me hydrocodone for pain relief at some future time? Scary thought.

me

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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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