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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

sunnyflower | @sunnyflower | Aug 9, 2020

PS: Where on the body are biopsies done? I am in so much pain I can't imagine even more!! I suspect it would be feet and/or lower legs? I know the Rheumatologists and Neurologists feel each other should manage neuropathy. I worked in health care over 20 years and have a zillion specialists, so I know this goes on between the two specialties. I have autoimmune Dz and Fibro as well as a myriad of other diseases and conditions, many of which are painful and 3, are rare. Warm regards, Sunnyflower

REPLY
1 reply
sunnyflower | @sunnyflower | Aug 9, 2020
In reply to @jesfactsmon "Hi @sunnyflower nice to hear from you again! I remember you from a few months ago...." + (show)
@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

Jump to this post

Sorry if this is a repeat. I think I replied in a different post of yours? I'm finally using my table and have it all figured it out now. I can see all the options you tell me about here. Be well, Sunnyflower

REPLY
sunnyflower | @sunnyflower | Aug 9, 2020
In reply to @rwinney "@sunnyflower Hi there. 😊 Doesnt it drive you crazy when that happens!? I've managed to need..." + (show)
@rwinney

@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

Jump to this post

Hi Rachel, thanks for your concern and the good info. Where on your body was the Bx, and can you tell me what the path report said? Thanks so much, Sunnyflower

REPLY
1 reply
Hank | @jesfactsmon | Aug 9, 2020
In reply to @sunnyflower "PS: Where on the body are biopsies done? I am in so much pain I can't..." + (show)
@sunnyflower

PS: Where on the body are biopsies done? I am in so much pain I can't imagine even more!! I suspect it would be feet and/or lower legs? I know the Rheumatologists and Neurologists feel each other should manage neuropathy. I worked in health care over 20 years and have a zillion specialists, so I know this goes on between the two specialties. I have autoimmune Dz and Fibro as well as a myriad of other diseases and conditions, many of which are painful and 3, are rare. Warm regards, Sunnyflower

Jump to this post

Hi @sunnyflower, if you don't mind my asking, and not wanting to pry, but could you tell me what the 3 rare conditions you suffer from are besides autoimmune, neuropathy and fibro? Just curious. You sure have a load of grief piled on you. My compassion vibes get really tweaked whenever I hear you speak about what you face on a daily basis. With love, Hank

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 9, 2020
In reply to @sunnyflower "Hi Rachel, thanks for your concern and the good info. Where on your body was the..." + (show)
@sunnyflower

Hi Rachel, thanks for your concern and the good info. Where on your body was the Bx, and can you tell me what the path report said? Thanks so much, Sunnyflower

Jump to this post

Hi @sunnyflower! My biopsy was a tiny scoop of skin and tissue taken from the back of my left thigh and from the back of my right calf. I was numbed first with a small needle. Minimal bleeding, covered with bandage and out the door. I'd say 15 minutes total in the office. The spots were tender for a few days and scabbed over. I never received my path report but, will be obtaining it, this Friday when I meet with my neurologist. Hope this info helps you! Have a pleasant rest of your day.
Rachel

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 10, 2020
In reply to @sunnyflower "HI John, Thank you so much for all you do for all of us! You are..." + (show)
@sunnyflower

HI John, Thank you so much for all you do for all of us! You are a warm, vast resource and greatly appreciated! Many blessings for serving us, Sunnyflower

Jump to this post

Hi @sunnyflower I am honored to be a part of Connect where we all help each other. Thank you also!

REPLY
Barry Sheales | @user_che214927 | Aug 10, 2020

Hi Sunflower. The person you ned to consult, is the best Neurologist you can find, after much research, including the great team at Mayo. Apart from the nerve test, which is generally completed first, to actually diagnose your condition. You will then will be requested to have a large numer of blood tests, in my case 27 tests, and a number of fMRI brain scans, where a coloured dye is added to your blood, for more accurate pictures of your brain. In my case it was hoped I may have been deficient in vitamin B12, which is often the cause of numbness in legs. The fMRI scans were to establish if brain surgery could be a possibility. The final diagnosis was that I definately had Peripheral-neuropathy, and that B12 was excellent , brain surgery, no options. We then discussed Neuroplasticity. He agreed that it is a possibility, BUT, will require disciplined new neuron buiding exercises, In other word IT IS possible to reverse my current condition.

REPLY
1 reply
sunnyflower | @sunnyflower | Aug 10, 2020
In reply to @artscaping "@maryflorida, I sure do understand your point of view. In addition to your questions about the..." + (show)
@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

Jump to this post

Hello Chris. Can you please tell me where on the body do they do the biopsies, and how many do they do? Can you also please tell me what the pathology report says? I assumed lower leg/feet, but also, there are places on my body that simply can barely be touched they hurt so bad like deltoids, upper back etc. I mean I jump! My skin can NOT be brushed in any way which is an allodynia Sx. My docs release all my diagnostic results to me whether blood work, MRI/CT/Bone Scans, you name it. I would LOVE to know exaxty what the path report says on the Bxs. Thank so much!! Warm Regards, Sunnyflower

REPLY
sunnyflower | @sunnyflower | Aug 10, 2020
In reply to @johnbishop "@maryflorida, You will notice that we changed the title of your discussion a little to help..." + (show)
@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.

Jump to this post

Hi John, could you please explain about changing the title? I still have so much to learn about this system!!!!! I don't see where the title is? How do I find subjects such as medications? I receive so many emails daily but they are random subjects and people and different things. I'm so confused! Thanks so much, Sunnyflower PS: I"m finally using my tablet which shows a lot more options available to me on the blog but I need a tutorial! LOL! Thanks, Sunnyflower

REPLY
1 reply
Hank | @jesfactsmon | Aug 11, 2020
In reply to @sunnyflower "Hi John, could you please explain about changing the title? I still have so much to..." + (show)
@sunnyflower

Hi John, could you please explain about changing the title? I still have so much to learn about this system!!!!! I don't see where the title is? How do I find subjects such as medications? I receive so many emails daily but they are random subjects and people and different things. I'm so confused! Thanks so much, Sunnyflower PS: I"m finally using my tablet which shows a lot more options available to me on the blog but I need a tutorial! LOL! Thanks, Sunnyflower

Jump to this post

Hi @sunntflower the title of any discussion page is at the very top of the page in bold black letters. So this discussion was started by maryflorida. There is another page that lists all of the neuropathy discussions, including this one. The one at the top of that list is the one most recently posted to.

Here is the link to that page: https://connect.mayoclinic.org/group/neuropathy/

If you want to find posts that mention certain medications, one way I would do that is to go to the top right side of this page where it says "Mayo Clinic Connect" and under that there is a symbol for a magnifying glass (looks kind of like a Q). Click on that and a little window opens up where you can type in the words of whatever you are searching for then hit the enter key. That will bring up posts in which that word appears. Maybe John knows a better way to do this but this is what I have done.

Sorry to hear about your allodynia, that must be maddening. All my best, Hank

REPLY
View MoreView Less
Please sign in or register to post a reply.