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

@maryflorida

I'm blessed by having the support of the many people here, as well. I don't interact every day because some days are too full, while others days find me more depressed. But even on hard days it can be helpful just to read through the various conversations.

I'm a little curious about your use of the phrase, you pray "that God won't take him from me." Is that just a way of saying that you don't want to see your husband die? Or do you actually believe that when he dies, it's God's doing. God will take him away from you. It's more than dying from cancer.

I don't want to comment about your use of that phrase because I would like to understand what lies behind the words.

Have you made any progress toward being tested specifically for neuropathy? Most tests are fairly painless, with maybe a couple of exceptions. Testing has told me several things about what I'm experiencing. The first one, a nerve conduction, showed that I have neuropathy, but that's not very specific. I understand that there are lots of types of neuropathy. By now, I know that I have idiopathic neuropathy, that it affects both sides, so I have idiopathic polyneuropathy. Then I learned that it's small fiber, and that there's a marker for it in my genes. So, it all adds up to idiopathic inherited small fiber polyneuropathy. Quite a mouthful. I'm also showing signs of autonomic neuropathy. I ask the doctors if what they see could be neuropathy related, and the answer is always the same. "Maybe." Whether it's double vision, tinnitus, esophageal dysmotility, reflux, urinary, ED, bowel, balance. It's always Maybe. Or Could Be. So, testing has helped me a lot in terms of why certain things are happening to me, and what other things might possibly be in my future.

One thing I do know for sure about my future is that I'm going to say goodnight, have our devotions, put on my Bipap mask and sleep for 9 or 10 hours.

Have a peaceful weekend.

Jim

@sunnyflower Oh my goodness, aren't you a sweetheart when you say you "don't want to cross any boundaries" by answering a question posed by me to someone else. Please do feel free to chime in, that is one of the things that makes Mayo Connect such a special place for us all. We are in this together, right? And this is a discussion that includes all of us here. So yes, I would very much like to know what your experience has been with pain from fibromyalgia. I have my own theories of how My Linda's pain manifests from "overdoing" as I said before. But I'm interested to hear how it works for you. Trying to figure out how nerves work is the holy grail of quests here. If we can just find any commonality among all PN sufferers it would sure be beneficial to everyone I would think. All my best, Hank

PS: as to your question about getting to the first skin biopsy post, all I can say is that when you are set to "oldest to newest" it should be the very first (rwinney's) post that appears at the top of the discussion (after maryflorida's post that begins the discussion). Sorry if I'm not hitting what you are asking.

@jimhd Jim, I was surprised and very happy for you when you say you are going to sleep for nine or ten hours. I am a big believer in the restorative benefits of sleep and it's a true blessing to be able to confidently go to bed at night and be pretty sure you're going to get enough. For Linda it is always tricky. I am grateful if she gets 5 hours worth. If she doesn't it's almost a guaranty she will have a worse than usual next day pain wise. I would say that on average she gets 5 hours (her bare minimum requirement) 5 or 6 nights a week. It's that 1-2 days per week that are very unhelpful to her health and well being. So, again, I am glad to know you are a good sleeper. With all that you are dealing with it is at least one ace in the hole that you have. Best to you, Hank

I think it was just an expression. I do pray that we will live together and one of us is not left alone. Last week our PCP told me that my husband has early dementia so I go to Mayo with him each time...

The problem I have about being tested is that I have asked 3 doctors to do it. The rheumatologist said, "I will ask a surgeon to do it." She never did, even though we reminded her. Three PCP's have told me (2 this year) that the biopsy is not necessary; they diagnose me by symptoms. I won't give up since I've been in pain for 10 years and all I have are "guesses". Is it fibromyalgia or neuropathy? My doctor said it is both, and I guess it doesn't matter since there is no cure, only pain management. Is that right? Mayo is out of network and most of our discretionary money goes for his medical care. When I can, I will pursue this further.

Just do not take no for an answer. You need to see a qualified Neurologist, and nobody else. He/she will will provide a DEFINATE answer, and answer ALL of your questions. Be strong, just grit your teeth and do it first thing Monday morning. Go for it Mary, I will be thinking of you , all the way from Australia.

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.

@maryflorida Good, make the call and arrange for the test, I agree with Barry. If you want to get the test (biopsy) and find out whatever that tells you, you should. Since insurance got so involved in health care many years ago, doctors have more and more become gatekeepers for the insurance companies, trying to hold down costs. That should not be the doctor's function. If you want something they should submit it, and then if insurance doesn't want to pay it let THEM be the ones to go on record and say we won't cover that. But the doctor should be YOUR advocate, not theirs! Good luck Mary, Hank

@maryflorida

You probably know my thoughts regarding God taking people away from their families. I really cringe when people say that to grieving parents. Things like "it was their time" or "God wanted them to be with Him" or "they're in a better place" aren't helpful to hurting people. It may well be that they're in a better place, but just giving a grieving person your listening ears and saying nothing is better than saying the wrong thing. Certainly there is a time to talk, but I try to use an old carpenter's rule, measure twice and cut once. Think at least twice and speak once.

Even when we find that we've said the wrong thing, many grievers understand the love and concern behind the words.

Anyway, I think it's exceptionally rare that God intentionally "takes" someone. It's pretty amazing to me the things that are attributed to God (or the devil). It's my personal observation that blaming God or Satan or karma is usually a way of not taking ownership of whatever we've done (not referring to the death of a loved one).

It's hard to watch our spouses hurting, and doubly so when we're in pain ourselves.

Jim

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