Frustrated, could I have Small Fiber Neuropathy?

Good afternoon @millis. Welcome to Mayo Clinic Connect. As mentors, we are a group of patients, caregivers, and providers who have learned a lot about their own diseases, conditions, and other medical issues. While we cannot prescribe or diagnose because we have no medical background, we can share our experiences with others.

When I hear or see the word numbness, my mind goes to nerves. On my body, these nerves appear to sometimes just give up on me. The numbness turns to tingles and then maybe to itching and back to numbness. A material called fascia connects our muscles to our ligaments to our bones and so forth. When the fascia in one place is disturbed, it can send messages to another part of the body. For example, when my MFR therapist works on the numbness in my right leg...I can feel the tingles going up and around to the leg on the other side. So it is possible that numbness in your face can reach down to the shoulder.

There is a simple test to determine if you have small fiber neuropathy (SFN). It's called a "skin punch biopsy." It only takes a few minutes and has little if any discomfort. When analyzed by a special lab, the percentage of nerve cells in the sample can be measured. Your neurologist will be able to administer the test.

Right this minute, I have numbness in my fingers on both hands but not enough to make me hit the wrong keys. Besides that, my right knee is having a fit and the right foot feels like it is made of leather. Tomorrow it might be the left knee and the left foot.

I am surprised your neurologist says he doesn't know what it is. Do you have pain along with numbness? Some folks have only the numbness. In fact, let me introduce you to @johnbishop. John knows a lot about neuropathy....he just doesn't know pain.

It would be helpful if you could respond with some information about other tests you have had and medications you are taking for this condition.

May you be safe and protected from inner and outer harm.
Chris

Hello @millis, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I have no medical training or background but from what I've read anything that can cause trauma or compression of nerves can cause neuropathy. Here's some information that mentions sciatica - Excerpt from link below - "Trauma or Compression - A common cause of nerve injury is physical trauma to the nerves, such as by injuries, falls, sports activities or surgery. Nerve function can also be compromised by other body parts pressing on the nerve. An example is sciatica, which is caused by a degenerated disc which allows a vertebra to press on a nerve root, causing pain in one or both legs. Another example is carpal tunnel syndrome, in which wrist structures press on nerves. This often comes from repeated activities like typing or hammering. Tumors, scars or bone spurs can also press on nerves and cause damage. Tight casts can inflict external compression that impacts nerve function." -- Neuropathy Commons - Causes of Neuropathy: https://neuropathycommons.org/neuropathy/causes-neuropathy

@jenniferhunter may have some thoughts or suggestions on sciatica or other possibilities. Have you thought about getting a second opinion from a major teaching hospital or health facility like Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@millis Welcome to Connect. John suggested that I might have suggestions for you. Asking questions is a good way to troubleshoot a problem, and I have some questions for you. I have had a lot of experience with physical therapy and I am a spine surgery patient, and would like to ask some questions that might be clues to your condition. I hope your doctors have asked questions like this in trying to help you. I am most intrigued by how exercise makes things worse and why because the cause and effect can lead to some answers about the source of the problem. These are questions I have asked myself which has helped me even when my doctors missed things. There can be many reasons for nerve issues, and if that is a physical issue of compression by another body part, physical therapy may be able to help. If it is a disease process at work, that certainly needs more detective work to figure it out.

What position is your body in to do your job? What kind of posture do you have for this and where are you looking?
Can you be more specific about where you are getting numbness.. in what parts of your legs? Does it change location? Intermittent issue?
Does raising your arms like a position for driving bring on numbness or symptoms? Same question for raising arms overhead?
May I ask specifically what body parts were tested with the MRI and ENG? Findings completely normal?
Have you had full MRI imaging of the spine or brain? Are there any findings on a report?
Have you had prior surgeries and where is the scar tissue or incision location?
You mentioned that exercise makes symptoms worse. Aside from that, are there body positions that make it worse? Do you stretch?
Also since you are a heart patient, are you getting fatigue or heaviness in your legs with exercise? What exercises are you doing?
Have you looked up side effects of any prescription medications that you are taking? Neurological symptoms can be side effects.
Does bending your spine or neck cause symptoms?
Are you having jaw or neck pain?
Do you have full range of motion with turning your head side to side?
Have you had any neck injuries or something like a prior whiplash in a car accident?
How long have you been seeing a chiropractor and why?
Are there any chemicals that you have been exposed to where you live or in a work place that are toxic?

The permanent numbness is my upper thighs, abdomen, left shoulder and upper arm and parts of my face, around my eyes, forehead, jawbone. My back is where I experience the most pins and needles, especially after a hot shower or when exercising. I do sometimes have burning like pain, but mostly it's just pins and needles. I have had two c-sections and a thyroidectomy, so the numbness in my abdomen may be related to scarring. I had an EMG that came back normal, and MRI's without contrast of my full spine and head. I work with a toddler with autism, so I am not sitting for very long and have no problems with movement. Full motion and no pain or problems lifting my arms. The only medication I take is levothyroxine and I've taken that for 30 years so I do not think it's any type of reaction to that. I did have cardiomyopathy after the birth of my daughter 14 years ago, but no one seems to think it could be heart related. My PCP is retiring and I get the sense that she's checked out, she just refers me to the neurologist when I point out that I am still experiencing this numbness The neurologist is someone I've never met in person and he is not....good. I have a phone consult with him coming up and I'm debating whether or not I should ask for a skin biopsy to test for SFN before I speak to him. Once I find a new PCP I'm hoping they can refer me to a different neurologist.

@millis Your SFN could actually be from being hypo when was the last time you saw and endocrinologist and had a thyroid panel NOT just TSH?

Im thyroid-less and I have been seeing a neurologist and was also recently told I have small fiber neuropathy (my skin burns) its like having a sunburn without the burn absolutely horrible it effects my entire body but my most troubled areas are the tops of my feet and hands (not diabetic) I obsessed over that and recently started developing a numb feeling in my tongue and my toes. I do regret my thyroidectomy every day as my health has disintegrated over the past 4 years and can’t get real medical help because my thyroid labs are ridiculously low in their levels all of them so according to my Endo im good! Thats why I can’t wear socks, shoes, gloves and wear pants and shirt to bed to keep my skin from touching and rubbing on my sheets when I move ... but Im good!! Agh.

I haven't had a full thyroid panel in almost two years, and now that I'm looking at my results it seems like my endocrinologist only tested TSH and T4, wondering why never T3? I had TSH tested last year and it fell within normal parameters, and I'm due to see my endo right around now for a follow up sonogram because I have regrowth of thyroid tissue. When I first had issues with numbness I repeatedly asked if it could be due to my thyroid and I was brushed off. I'm going to request an appointment with my endo right now and have it include a full panel including T3.

Peripheral neuropathy is a condition resulting from the deterioration of the peripheral (most distant from the center) nerves. Your symptoms mostly sound like they are related to the more central nerves.
The skin test is usually done on the top of the foot, which are the most distant nerves of all, and is the part usually (not always) affected first. I'm not sure if skin tests of more central areas are even done. You are not describing any symptoms of the feet or hands, where PN usually manifests.
The best thing would be to start fresh with a new neurologist that you like, and let him/her proceed with the workup in the usual order, without too much of you managing the workup with suggestions, etc. Skin testing is usually one of the last tests done.

I read that non linear small fiber neuropathy can affect the trunk of the body and the face? It's actually hard to even say if I have hand or feet symptoms. I've had a burning pain on the top of my right foot for a couple of years, but I chalked that up to my bunion. My hands are extremely sensitive to cold, but I've also been told I have Raynaud's syndrome. Typing all of this makes me sound like a mess but I'm really not!

I know how you feel. It's hard enough dealing with a chronic condition, but even harder when the condition is unknown and there are so many variables and changing patterns.
Try to disengage from the constant mental turmoil of how to figure this out. Go to a good neurologist, and start from scratch. Don't try to direct the workup. Even though you may not get a totally specific diagnosis, you and your providers will learn a lot, particularly ruling out more threatening conditions.
Understand that you may still be left with questions, and that nobody may know the answers. If so, you're certainly not alone.

Hi. I can imagine how you feel. When I first got sick I was in top physical shape n thought I had pulled a muscle in my neck. My entire L side pain n pins n needles. Cervical degeneration n spinal stenosis is my thing with degenerative disk n bone Spurs. They pinch th nerve roots. Lost use of my arm too n th most severe migraines. Every day.
Don’t use an orthopedic spine dr- get a neurologist n a neurosurgeon if you need spine surgery.
It can b a number of things but pinched nerves all act painful or numb plus or minus th rest.
I wish you the best.
Be careful after surgery. There’s a condition called post surgical neuropathy that can happen. If you have burning n severe pain within a few weeks of surgery don’t let it go. Push th docs n believe in what your body tells you.
A good mri should tell you th basics.
If it’s really neuropathy don’t let it go. Neuropathy gets worse over time n will disrupt organs n bodily functions.
I can’t even get a punch biopsy ( to test for neuropathy). In 21 yrs I’ve had to educate myself. Only when tremors started did I get scare back in 2019.
There’s specialist for neuropathy but ea state is different. In my state there’s only 1 in Richmond . So I’m resorting to calling my insurance co n maybe they can tell me.
Don’t be surprised if you get inner ear pain.
I lean on herbal supplements a lot.
Prayers fr you.
I wish you luck.