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

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

Thanks, Barry. I will make the phone calls Monday. Also just so tired, I am 79 and have to do all the household and some yard work. Sometimes it is just too much.

Hi Rachel, just saw this. Thanks so much! My worst pain isn't in the areas that you had your biopsies taken from, do you have much pain in those areas? I know it's very personal, and I do not want to cross any boundaries, but if you are comfortable sharing what your pathology report says when you receive it or them, I would be very interested to know want it or they say. I worked in healthcare over 20 years and my career goal was to become a physician assistant so all of the providers that I worked with trained me a lot. Then I could just got too sick to fulfill my career goal. I want to really get educated on this so when I ask for my biopsy or two or three, and see the pathology report, I will understand it or them. Thank you so much and hope you are having a tolerable and even good day. Blessings, Sunny flower

Sure. I don't think
1. Nutcrackers Esophagus, aka Jackhammer Esophagus is a motility disease diagnosed by an esophageal manometry, often confused as cardiac vs. GI. It presents as cardiac pain: severe sharp mid-sternum and INTENSE throbbing jaw Pn) from the esophageal muscles spasming. Tx is nitroglycerin SL. After the 3rd tab, waiting 5 minutes between each, if Pn persists then 911 call.). Tx also is an esophageal stretch under anesthesia. My 3rd is scheduled for this coming Wednesday. Ug. Not sure if it's auto Dz.

2nd. Minute Diffuse Meningotheliomatosis. I have innumerable little tumors in both lung Dx'd by 3 lung biopsies which also showed asthma and mild emphasema. No Tx now, just following with CT scans. I thought I read there have only been 25 people who have this. Don't think it is an autoimmune Dz.
3. I just learned I have a stenosed (greater than 50%) brachial artery diasnosed by neck/arm ultrasound. I will see vascular surgeon soon. Yikes, scary. This one may be part of my autoimmune Dz.
Sorry if any of this is a repeat. I thought I had talked about some of this somewhere else? I REALLY need to know if I can access my replies in a user-friendly way so that I won't be repeating myself. Oh dear. Thank you and take good care, Sunnyflower

Thx Hank. I thought I did try what you said to do to access the first pist about Bx's.
Re: fibro Pn, I never get flares, it's there all the time. Feels like the flu; every skin cell so and throbs and aches and I can't be touched in the textbook places and must be touched in specific ways everywhere else. Now that I have head to toe neuropathy, every nerve is agitated, burning, and stinging, so there are two specific unique pains. I also have the fibro fog where it's very hard to track, concentrate, make decisions, remember Etc. The Gabapentin I take for my neuropathy exacerbates that greatly! I run a low-grade temp of sometimes around a hundred with my pain. Does that sound like what your Linda goes through? Also, regarding the biopsy, I have asked it before but have not seen an answer, I am wondering where on the body set biopsies are taken from. Do you know? I would think a dermatologist might do a better job of it than the neurologist LOL! I have no problem asking my doctor for it. I have also asked but if not heard back, what the pathology report says about the skin nerves. I have read a little bit online but I would like to hear from you guys on the blog what your path report showed to validate your condition. Can you help with that? You seem to be very much in the loop. I appreciate everything. Many blessings, Sunnyflower

@sunnyflower No, what you describe about your fibro is different in that for you it's there always whereas Linda's calms down when she stops doing too much. So yes, hers are flares as you say. It is awful while she goes through it but it does go away eventually. I will have to ask her about "fibro fog" as I am not sure she has mentioned that to me. She did get foggy brained when she took gabapentin though, but it went away after she went off of it. She was also foggy for a few years after chemo, which the chemo caused. That went mostly away when she (and I) started taking all of the mitochondrial boosting supplements that we now take, including Acetyl L Carnitine, Niagen and Mito-Q among others. I will read Linda all of your recent posts tomorrow and if she has any responses beyond what I have stated I will let you know. Best, Hank

Thanks @sunnyflower you really do have some rare conditions. Scary is right. I will not pretend that I have any idea what living with these disorders is like. But thank-you for enumerating them, it's hard to comprehend that everything that afflicts you is all happening to just one single person. You are definitely a trooper to face all of this while you seem to maintain such a good attitude toward life. As I have mentioned to you before, you are very fortunate to have the Faith that you have, which I remember you discussing when I first read a post of yours early this year. That is something that is irreplaceable and can give strength like nothing else in life. My well wishes go out to you and I wish you best of luck on your upcoming doctor visits. Hank

Thank you. I realized I had not put my stage 4 kidney Dz in w/ my list of conditions. Yes, I am truly blessed. I have my spiritual side and my human side. My humand side has a tolerance and too often I'm at the threshhold; overwhelmed, going to lose it. So far, with God's help and my understanding of my experience and this life being so temporary, I can receive peace from the truth of God's word. Tisn't easy! By the grace of God go I!

@jesfactsmon @jimhd Hank and John, For me, I get feeling alienated feeling from my family, when they don't ask about how I am doing, or when they say things that show me that they have not been really listening very well. Being that I cannot control my emotions, I do tell them, however. It pains some to them to know, and some just don't get it. I think at some level, if a person has never felt extreme, relentless pain, they just can't comprehend. I am almost glad when they don't understand, because it means they are well!!! I think it quite exceptional to have a person that really wants to hear. Each of us has our burdens, and some people just don't want more. This is such a hard subject. Love you guys, Lori

Hello Lori and everyone else who struggles with these issues in the context of affliction.

In 1981, I attended a two-day seminar taught by Joni Eareckson and Friends. Their Ministry was to equip the church how to minister to the handicapped/suffering/afflicted.

Joni became a quadriplegic after a diving accident as a teen. She is an author, singer and painter. She said three things that have stuck with me all these years. One is that people tend to distance themselves from the afflicted because they fear more will be required in that relationship. She said that being around afflicted people, reminds people of their own mortality. Thirdly, Joni said that 80% of people in the room were only TEMPORARILY well and healthy. There were an awful lot of people in that room!

So all of those things became true in my life. Almost every friend but a very, very faithful few, have distanced themselves from me because I became quite ill. It really hurts.

I'm the kind of friend who always used to put forth a lot of effort into initiating and cultivating relationships and makes sure that I put others before myself and keep a lot of laughter in the relationship :-). Now I have become so ill, and am in so much pain, I don't have the physical strength to put as much of myself into relationships anymore but make myself available when there is a need and there are a lot of them!

For many, many years I have had a lot of people come to me for counsel. I am an encourager and love to help. I am able to help people see they have options and to offer strategies, resources, comfort, validation, prayer, etc. Almost 100% of the people that come to me for counsel, do not have physical afflictions rather mental health issues and problems in life.

This blog is such a wonderful thing and I am very grateful for it! Thanks to all of you. My heart goes out to each and everyone of you! Many blessings, Sunnyflower