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

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.

Jump to this post

Hello Barry. I have been diagnosed by 2 neurologists (SFPN) and several Rheumatologists over the years (mixed connective tissue Dz/Fibromyalgia/collagen vascular Dz/etc.) Strangely, my SFPN is pretty much head to toe and, even more strange, along with the painful skin burn/sting, is numbness almost everywhere! I think I likely said that I can't feel wetness, even when in a swim pool! I can however, feel temperature and pressure. All my specialists and medical providers tell me I 'm a complicated patient. I reply, "hey, you're interfering with my denial!" with a smile. I really wish they all would quit saying that. My Rheumatologist said it last week. It's amazing how much self-care is required each day! Friends and family don't understand. I have been advised to ask them to adjust their expectations. It's complicated. They don't see it bc I'm always smiling and positive. Think I will add some of the last of this message to the Living With Neuropathy subject in hopes it will help someone. I have the best, most supportive husband. I am so blessed! Warm regards, Sunnyflower

Jump to this post

@sunnyflower I know what you mean about the "always smiling and positive" demeanor causing others to not think what you have is as severe as it is. When my wife (who has bad neuropathy), talks to anyone, including our families, she seems very strong and forceful, outgoing and very good natured. She is somewhat stoic and even if she is suffering badly she still can manage to mostly seem normal to others. I don't think all of them realize how bad it is. I have to tell them and describe what she goes through. Then they say, "Wow, that's bad!" and I say "Yeah". Otherwise they just don't quite get it, like when she was not able to travel to see them (before covid). I don't think they really ever believed she was in that rough of shape. Best, Hank

Jump to this post

@jesfactsmon @sunnyflower

I get it. That can be the down side of wearing the smiling, "I'm fine" mask. Disability that's not visible, at least for me, is almost worse than using crutches. And neuropathy is one of the challenging ones. Not even the top neurospecialists can give us much positive help. Certainly no definitive cure. We can have all of the tests done and not be much closer to being pain free. Tests do help us understand to some extent what our bodies are doing. And I like knowing as much as I can.

Mental health unwellness can also be invisible, depending on the person and the illness. I was a master at wearing the mask. But that's a subject for a different forum. Our daughter understands completely, but our son seems blind to the pain my wife and I both live with.

I'm looking forward to my appointment with my neurologist next week, to learn the results of a couple of test retakes. As I said, I like knowing all I can. Maybe even a little OCD about it.

Jim

Jump to this post

@sunnyflower I know what you mean about the "always smiling and positive" demeanor causing others to not think what you have is as severe as it is. When my wife (who has bad neuropathy), talks to anyone, including our families, she seems very strong and forceful, outgoing and very good natured. She is somewhat stoic and even if she is suffering badly she still can manage to mostly seem normal to others. I don't think all of them realize how bad it is. I have to tell them and describe what she goes through. Then they say, "Wow, that's bad!" and I say "Yeah". Otherwise they just don't quite get it, like when she was not able to travel to see them (before covid). I don't think they really ever believed she was in that rough of shape. Best, Hank

Jump to this post

@jimhd , I think that is the conundrum of having been a more or less happy, well adjusted person before neuropathy entered the scene. That is who Linda was. That is still who she is except now you she is in constant unrelenting pain. It doesn't change the essential person she was/is, the Linda that doesn't naturally want or like to inflict her own problems on others. It doesn't give her a payoff to do that. That is my experience. But it does make her pain invisible, except when she talks about it in conversation, which is not very often and only in passing. She usually does not verbally complain about it. I suppose it's a personality thing, for some it's therapeutic to verbalize their pain often, for others it's not. Best, Hank

Jump to this post

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

Jump to this post

@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

Jump to this post