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.

@sunnyflower

Hi Stephanie, thanks for reaching out! I'm not a good one to ask about Gabapentin. I have such horrible side-effects from this medicine and am only taking a sub-therapeutic dose at 800mg. per day. I feel so drugged w/ this medication. It affects my ability to track thoughts and really does a number on my memory and sometimes judgment. Also, I will think a thought and it will disappear instantly before I can do with it what I need to do. It eventually comes back, but it could in a few minutes or often, a day or so later. I described the vision disturbances it gives me yesterday under the subject of eyes I believe. Why do I continue on it, is because it dulls my pain to a tolerable or barely tolerable level. I hope that helps. Everyone responds differently to medications, even a Tylenol. Unfortunately, you just have to try to know. I've gone up and down on my dose quite a few times. I was started at 100mg. twice daily at first but since have learned that it must be taken 3 times daily, at least for most people I believe. It doesn't have that long of a half-life so thus, take doses closer together in a day. I tried Lyrica but thought the side-effects were worse and it didn't dull my pain as much as the Gaba. BTW, my pain is all over as well. I have several diseases and conditions which are painful besides my neuropathy which is such a wicked disease! Burn/sting/numb….horrible! Unrelenting. I hope and pray this medication will help you and that you find your right dose. For some people, I think over time it needs to be adjusted. I'm shocked to read some are taking over 3,000mg./day!!!!!!!!!! Hang in sister and warmest regards, Sunnyflower.

Jump to this post

@sunnyflower

Unrelenting. That's a great descriptive word.

I have the same trouble with having a thought and losing it before I can open evernote on my phone to write it down. I prefer writing to speaking because it gives me time to come up with the word I need or a thought I want to express. If I have to speak publicly, I write exactly what I want to say. I don't trust myself not to say something dumb. I often have to describe to my wife a word I'm trying to pull up. It can be frustrating. I try never to send a message without proof reading it. Too often, when I forget to proof read, I have to go back into the message and edit, or even delete the whole thing. I have several meds I can blame.

I enjoy reading your posts. You have a wealth of knowledge to draw from, and I learn new things all the time. I admire your ability to put on a virtual smile when you write in the middle of tremendous pain. I'm thankful for your gift of encouraging. You're a blessing.

Jim

REPLY
@jimhd

@sunnyflower

Unrelenting. That's a great descriptive word.

I have the same trouble with having a thought and losing it before I can open evernote on my phone to write it down. I prefer writing to speaking because it gives me time to come up with the word I need or a thought I want to express. If I have to speak publicly, I write exactly what I want to say. I don't trust myself not to say something dumb. I often have to describe to my wife a word I'm trying to pull up. It can be frustrating. I try never to send a message without proof reading it. Too often, when I forget to proof read, I have to go back into the message and edit, or even delete the whole thing. I have several meds I can blame.

I enjoy reading your posts. You have a wealth of knowledge to draw from, and I learn new things all the time. I admire your ability to put on a virtual smile when you write in the middle of tremendous pain. I'm thankful for your gift of encouraging. You're a blessing.

Jim

Jump to this post

@sunnyflower, @jimhd, Good evening. I think I can pass the membership test to your special foggy brain club. And mine also started with Gabapentin. Originally prescribed for morning and night, I found that the mornings were really screwy. I could never quite get going. And my brain/memory appeared to be on holiday.

So…..my neurologist recommended nighttime only for gabapentin and that works. It does help with the tingles and needles in my arms, head, wrists, and hands. And with a little help from some medical cannabis, I can get a good night's sleep……unless it's a neuropathic itch night. Now that's a challenge. If I take enough itch medicine I can sleep reasonably well but when I wake up in the morning, my skin is just covered with bloody areas from scratching while I was asleep. Even with the medical cannabis, I cannot seem to make it through the night.

I enclose photos so that you can see what I look like in the morning. Sometimes it is just the upper body and other nights it is legs and feet. Sometimes the toes are locked and I have to separate them manually.

Was I that bad in third grade? Bad enough to end up looking like this? Where did I go wrong?

May you two be free of suffering and the causes of suffering.

Chris

REPLY

@artscaping

I'm fortunate to be spared the itching. Sometimes that can be as unrelenting as burning pain. Have you found any low tech solutions for scratching? I remember when the sleep doctor told me I had sleep apnea, he said I have two options – a cpap machine or a tennis ball sewn into the back of a t-shirt. Most of my events happen when I'm lying on my back. Marilyn, my wife, gives me a poke when I'm on my back with my mouth open and air blowing out, waking her up. I was a mouth breather the first 50 years of my life, until I had surgery to correct a deviated septum. All of a sudden I could breathe through my nose! It was an amazing feeling.

Sorry. I digress, as usual.

I hope you have a peaceful rest tonight, with no unconscious self harm.

Jim

REPLY
@artscaping

@sunnyflower, @jimhd, Good evening. I think I can pass the membership test to your special foggy brain club. And mine also started with Gabapentin. Originally prescribed for morning and night, I found that the mornings were really screwy. I could never quite get going. And my brain/memory appeared to be on holiday.

So…..my neurologist recommended nighttime only for gabapentin and that works. It does help with the tingles and needles in my arms, head, wrists, and hands. And with a little help from some medical cannabis, I can get a good night's sleep……unless it's a neuropathic itch night. Now that's a challenge. If I take enough itch medicine I can sleep reasonably well but when I wake up in the morning, my skin is just covered with bloody areas from scratching while I was asleep. Even with the medical cannabis, I cannot seem to make it through the night.

I enclose photos so that you can see what I look like in the morning. Sometimes it is just the upper body and other nights it is legs and feet. Sometimes the toes are locked and I have to separate them manually.

Was I that bad in third grade? Bad enough to end up looking like this? Where did I go wrong?

May you two be free of suffering and the causes of suffering.

Chris

Jump to this post

@artscaping Chris, When they say pictures say a thousand words, it is utter truth. I have tears in my eyes, looking at your legs. Oh my goodness. Why are we subject to agony? I am beyond words. Speechless. And through your agony, you find an ability for kindness, compassion, caring, concern. You someday, have direct access to Heaven. I cannot talk. I cannot say a thing. I am too overwhelmed. I am crying here. Feeling for everyone, so deeply. This is all not fair. Love to you, Lori

REPLY
@jimhd

@artscaping

I'm fortunate to be spared the itching. Sometimes that can be as unrelenting as burning pain. Have you found any low tech solutions for scratching? I remember when the sleep doctor told me I had sleep apnea, he said I have two options – a cpap machine or a tennis ball sewn into the back of a t-shirt. Most of my events happen when I'm lying on my back. Marilyn, my wife, gives me a poke when I'm on my back with my mouth open and air blowing out, waking her up. I was a mouth breather the first 50 years of my life, until I had surgery to correct a deviated septum. All of a sudden I could breathe through my nose! It was an amazing feeling.

Sorry. I digress, as usual.

I hope you have a peaceful rest tonight, with no unconscious self harm.

Jim

Jump to this post

@jimhd so was your apnea corrected by the surgery? If not, I just wanted to say that Linda had sleep apnea for the first 39 years we were married. We tried a number of things such as breathe-rite srips and other tricks (escape my memory at the moment) but she always resisted a cpap. Finally about 3 years ago she tried a foam wedge which elevated her upper body (see Amazon link below) and her apnea was gone immediately and has not returned. Just thought I would pass that on if you still have apnea and have not tried this. Hank
https://smile.amazon.com/Wedge-Pillow-Memory-Cushy-Form/dp/B07CG8H7GT/ref=sr_1_5?dchild=1&keywords=wedge+cushion+for+sleeping&qid=1598463270&sr=8-5

REPLY
@jesfactsmon

@jimhd so was your apnea corrected by the surgery? If not, I just wanted to say that Linda had sleep apnea for the first 39 years we were married. We tried a number of things such as breathe-rite srips and other tricks (escape my memory at the moment) but she always resisted a cpap. Finally about 3 years ago she tried a foam wedge which elevated her upper body (see Amazon link below) and her apnea was gone immediately and has not returned. Just thought I would pass that on if you still have apnea and have not tried this. Hank
https://smile.amazon.com/Wedge-Pillow-Memory-Cushy-Form/dp/B07CG8H7GT/ref=sr_1_5?dchild=1&keywords=wedge+cushion+for+sleeping&qid=1598463270&sr=8-5

Jump to this post

@jimhd Had same problem got an adjustable bed raise head up ,no problems then

REPLY
@jimhd

@sunnyflower

Unrelenting. That's a great descriptive word.

I have the same trouble with having a thought and losing it before I can open evernote on my phone to write it down. I prefer writing to speaking because it gives me time to come up with the word I need or a thought I want to express. If I have to speak publicly, I write exactly what I want to say. I don't trust myself not to say something dumb. I often have to describe to my wife a word I'm trying to pull up. It can be frustrating. I try never to send a message without proof reading it. Too often, when I forget to proof read, I have to go back into the message and edit, or even delete the whole thing. I have several meds I can blame.

I enjoy reading your posts. You have a wealth of knowledge to draw from, and I learn new things all the time. I admire your ability to put on a virtual smile when you write in the middle of tremendous pain. I'm thankful for your gift of encouraging. You're a blessing.

Jim

Jump to this post

Jim, I find so many times I'm saying something I wish I wouldn't have and wanting to crawl under a rock! Then I continue to beat myself up for it for the rest of my life! AAaahhhh! 🤭😶🤫🥺

REPLY
@jimhd

@artscaping

I'm fortunate to be spared the itching. Sometimes that can be as unrelenting as burning pain. Have you found any low tech solutions for scratching? I remember when the sleep doctor told me I had sleep apnea, he said I have two options – a cpap machine or a tennis ball sewn into the back of a t-shirt. Most of my events happen when I'm lying on my back. Marilyn, my wife, gives me a poke when I'm on my back with my mouth open and air blowing out, waking her up. I was a mouth breather the first 50 years of my life, until I had surgery to correct a deviated septum. All of a sudden I could breathe through my nose! It was an amazing feeling.

Sorry. I digress, as usual.

I hope you have a peaceful rest tonight, with no unconscious self harm.

Jim

Jump to this post

Oh Chris!!! I am so very sorry to hear about and see what you're going through! Have you been to see a Dermatologist for this? If not, I definitely would ASAP. Definitely bring these pictures with you. They will need access to labs, meds, etc. which I 'm sure you already know. If you can't get in to be seen soon, just tell them you' re suffering and can't take it anymore and are at risk for infection. Tho are usually the magic words to get in sooner.

I wish you all the best and will be praying for you. Hang in there! Warmest regards, Sunny 😊🙏

REPLY
@jesfactsmon

@jimhd so was your apnea corrected by the surgery? If not, I just wanted to say that Linda had sleep apnea for the first 39 years we were married. We tried a number of things such as breathe-rite srips and other tricks (escape my memory at the moment) but she always resisted a cpap. Finally about 3 years ago she tried a foam wedge which elevated her upper body (see Amazon link below) and her apnea was gone immediately and has not returned. Just thought I would pass that on if you still have apnea and have not tried this. Hank
https://smile.amazon.com/Wedge-Pillow-Memory-Cushy-Form/dp/B07CG8H7GT/ref=sr_1_5?dchild=1&keywords=wedge+cushion+for+sleeping&qid=1598463270&sr=8-5

Jump to this post

Hi Guys, just wanted to say something you probably already know but just in case you do not, I feel compelled to say that sleep apnea is a comorbid disease. It is very serious and MUST be treated. For those who may not know, the diagnostic is an overnight sleep study where you are wired up like you can't imagine and monitored . Sleep apnea is usually taken care of buy a pulmonologist. I care, Sunny

REPLY
@sunnyflower

Oh Chris!!! I am so very sorry to hear about and see what you're going through! Have you been to see a Dermatologist for this? If not, I definitely would ASAP. Definitely bring these pictures with you. They will need access to labs, meds, etc. which I 'm sure you already know. If you can't get in to be seen soon, just tell them you' re suffering and can't take it anymore and are at risk for infection. Tho are usually the magic words to get in sooner.

I wish you all the best and will be praying for you. Hang in there! Warmest regards, Sunny 😊🙏

Jump to this post

@sunnyflower, thank you. I know that all of us cope with so much from a condition that has no cure. It seems like every time we think we might have found a way to pain free comfort……we get shot down once again. Hang in there. I need your support just as you are gratefull for the support from Connect.

Be healthy and whole…….
Chris

REPLY
@jimhd

@artscaping

I'm fortunate to be spared the itching. Sometimes that can be as unrelenting as burning pain. Have you found any low tech solutions for scratching? I remember when the sleep doctor told me I had sleep apnea, he said I have two options – a cpap machine or a tennis ball sewn into the back of a t-shirt. Most of my events happen when I'm lying on my back. Marilyn, my wife, gives me a poke when I'm on my back with my mouth open and air blowing out, waking her up. I was a mouth breather the first 50 years of my life, until I had surgery to correct a deviated septum. All of a sudden I could breathe through my nose! It was an amazing feeling.

Sorry. I digress, as usual.

I hope you have a peaceful rest tonight, with no unconscious self harm.

Jim

Jump to this post

Hi @jimhd, yes, I am working with a dermatologist. And…..the FDA has a couple of products in testing just for neuropathy itch. I am practicing mindfulness in an attempt to ignore the itching. Tough job. I wish I knew what set off the itching that is related to neuropathy. I do know that the itching is inside my body where I can’t reach. I still try though as you can see. I do use anti-itch and benedryl and a cannabis balm. It is a struggle.

Thanks for your caring response.
Chris

REPLY
@sunnyflower

Hi Guys, just wanted to say something you probably already know but just in case you do not, I feel compelled to say that sleep apnea is a comorbid disease. It is very serious and MUST be treated. For those who may not know, the diagnostic is an overnight sleep study where you are wired up like you can't imagine and monitored . Sleep apnea is usually taken care of buy a pulmonologist. I care, Sunny

Jump to this post

@sunnyflower
Sunny you are very right, it is a serious condition, and we knew that for a long time, but I guess did not realize actually HOW serious it was. My wife's family all had it and many of them died of strokes. I am so glad she no longer has it. It was so amazing how simple it was to stop, merely by adding an incline to her sleeping situation. Wonder of wonders! Best, Hank

REPLY
Please sign in or register to post a reply.