I am reaching out to see if other people had similar widespread neuropathy that is progressive and found the cause and/or treatment that works. I'm at a loss. I want to preface this with the fact that I have hypermobile Ehlers Danlos Syndrome, POTS, Mast cell activation syndrome. I know that trifecta tends to develop small fiber neuropathy (never got tested) but since my EMG was positive I don't think I have that... I never had any respiratory illness or virus. I have a strict clean diet but restricted due to lots of allergies. I take electrolytes powder daily in water to help with my POTS condition (need high salt to help treat POTS symptoms).

Here is the nutshell version (seriously it's condensed) for the last 10 months:

Since June of last year I have had very tight abdominal muscles in my lower and lower right abdomen which causes multiple trigger points that won't go away (sometimes with rest they do). I have not had any overexerting exercise or physical therapy to explain why my abdomen was so tight and painful. I know I am due for some PT to help strengthen and coordinate muscles but the pandemic shut everything down. I had severe GI pain that moved around for awhile and we thought maybe it was blocked intestines. Multiple GI testing series revealed nothing going on with my GI tract and we ruled it strictly muscular problems.

November of last year I developed complete numbness down the back of my left calf which also tingled. Then numbness soon developed into both legs from my lower back into feet. Nearly daily muscle spasms in legs, balance issues, falling over trying to put on socks or pants or showering, etc. I already had bad proprioception and walked into things often as I have issues with where my body is in space-- when my nerves started getting messed up I have even worse proprioception now. I lost leg hair in distinct patches on the front/side of my legs. I had intense itching which was not due to my MCAS and did not respond to MCAS medicine which means it's itching due to the nerves. I got episodes of fast twitching in the WHOLE leg (upper and lower into feet) when laying down at first (the episodes stop after 30 min-1 hr). My neurologist in December started me on very high methylB12 and methylfolate supplementation for 6 months to see if it was dietary (I have a restricted diet due to MCAS). We did a lumbar MRI and nothing really jumped out at us explaining this (see below for results). I scheduled an EMG but had to wait 4 months.

In December I lost the ability to feel bladder signals, so I need to watch the clock because I have no sensation/signals whatsoever. I get INTENSE painful bladder spasms that come with or without urine leaking (several times it was FULL bladder accidents, other times it's a moderate amount of leakage which requires me to clean up and change clothes; I leak daily and have spasms nearly every day but it doesn't always result in full bladder accidents).
I had my EMG done in March and it was a mess with a lot of stuff happening. My neurologist told me the report said "sensory motor demyelinating axonal neuropathy." However I saw another neurologist for a second opinion who didn't agree with the EMG results (see below for more about EMG).
The twitching episodes have not happened after January. The patches of hair missing have regrown since June of this year. Before this nerve thing started in November I had some tingling in my left leg when sitting on the toilet occasionally that would go away as soon as I stood up.

In Februrary I developed a numb patch on my right shoulder blade that I only found when my boyfriend was trying to give me a massage. This is also when I started to have worsening brain fog and trouble finding the right word (I'd say the wrong word, or type a completely different word instead of what I was thinking. I've had brainfog in the past but THIS level of trouble with cognition is scaring me. It greatly impedes me being able to focus- one simple example being counting to 20 when washing my hands: I would suddenly start counting the wrong number (like 20, 21, 42, 43...) or won't remember where I was so I would need to restart. This impacts me being able to talk to others or type.) I also started getting episodes of numbness, itching and crawling sensation in my temple/scalp area.

In May I lost sensation in my genital region, but my rectum is fine. Still able to urinate and have a bowel movement. Sometimes urine doesn't completely void so I have to sit up and then sit back down again to empty the rest of my bladder. Reviewed all this with a urogyn doctor and she suggested urodynamics test.

In June I started getting off and on numbness in my upper left lip and into my nose. It could come with stabbing or itching pain. It would go away after maybe 3 min to a couple hours. My face & temples are the only areas where the numbness & symptoms would be episodic and go away. Every other area is constant numbness and symptoms.

The last 6 days I have had what feels like a pinched nerve in my lumbar area, extending from the spine out to the right. This is a new and recent development. My physical therapist says it is most likely pinched nerve. I am frustrated because I keep getting more and more problems!!!

My lumbar MRI done in December (early on) only shows "mild/moderate foraminal narrowing" and some mild disc bulges but nothing severe enough to explain this neuropathy/nerve progression so fast.

Brain, cervical & thoracic MRI was done a couple months ago and has no sign of MS lesions, tumors, or nerve pinching. I have a benign nerve sheathe tumor that has been size-stable at T12 since we've been monitoring it.

Ruled out any genetic neuropathy causes, no diabetes, only a slightly borderline TSH that has been consistent for several months now, no heavy metal poisoning, negative autoimmune testing (I suspect I have Sjogrens because I have dry eye, very dry skin, and trouble producing enough saliva but blood testing is always negative).

I have low ferritin which I am slowly trying to get up higher but trouble absorbing iron. Neurologists don't think a low ferritin could be causing this severe of a neuropahy/neuromuscular condition.

Very high methylB12 and methylfolate supplementation has not fixed this after 6 months of supplementation.

My legs EMG showed up positive with lots of stuff in red ("sensory motor
demyelinating axonal neuropathy"), but my second opinion neurologist questions the EMG results as being over interpreted so I don't know if it's even accurate.

I don't know if small fiber neuropathy is worth testing since my EMG (which tests large fiber) is all over the place with so many issues. My mast cell dr recommended getting small fiber neuropathy testing done, but I feel like that won't possibly explain everything...just feels like one huge mess and no answers. My mast cell doctor also said he "couldn't rule out mast cells causing neuropathy so it is a possibility."

Within the last 4 days I now have numbness down the back of my arm and into my ring and pinky finger and weakness in my grip. It causes forearm pain and weakness doing things if I end up trying to use my arm. This is problematic since it is my dominant arm. I have been in physical therapy since June but I think my therapist is just overwhelmed and doesn't know how to handle someone with such extensive numbness and trouble engaging some of my muscles which leads to challenges with trying to strengthen in PT (especially weakness in lower abdomen, lower leg, balance).
I do have neck pain/base of skull pain occasionally, but it is not too bad and not debilitating. I most likely have a mild form of CCI, but I don't think this is causing all of this since it is so mild. It bothers me just enough to not use a pillow at night. My doctors don't think it's tethered cord either since it is so extensive in so many areas of my body (upper and lower). My neurologists both think based on the EMG that I have a form of "immune-mediated neuropathy."

Does anyone have similar experiences with such extensive nerve problems all over the body? Have you found out what was causing it?Since it is now impacting my ability to use my arm it is scaring me because I do not want to lose the ability to do my job.

Hello,
So many things going on..
I suggest using our search tool and exploring the useful sticky threads in the upper section of each forum topic.

There are past posts on Ehlers Danlos Syndrome, POTS, hyper mobility on our Thoracic outlet syndrome forum.. TOS for short..
TOS can be related to arm & neck pain and more, blood flow or nerve impingement..can be work related , desk postures , computer etc... forward arm/head postures...

Might consider adding naturopathic or other alternative care with all that going on for you..

I have already used searches before I posted this - thank you. TOS is not what I have - it does not effect other areas outside of the thoracic outlet. I am familiar with it. I posted this in hopes someone else can match this experience...

OP, I don't have your issues but do deal with now limited neuropathy on my right side from hip replacement. I work on keeping a pretty clean diet and use a lot of supplements. If you took the covid "jabs" some of this could be side effects, just thinking outside the normal box of it all. Hope you can reduce a lot of your issues.

The symptoms you mentioned below are what made me think of TOS or possibly RSI/myofascial related conditions. Just related to those symptoms, not everything..
Generic PT plans usually do not help for those with TOS..or complicated and mixed diagnoses for that matter....standard PT can make it worse...

[Within the last 4 days I now have numbness down the back of my arm and into my ring and pinky finger and weakness in my grip. It causes forearm pain and weakness doing things if I end up trying to use my arm. This is problematic since it is my dominant arm. I have been in physical therapy since June but I think my therapist is just overwhelmed and doesn't know how to handle someone with such extensive numbness and trouble engaging some of my muscles which leads to challenges with trying to strengthen in PT (especially weakness in lower abdomen, lower leg, balance).
I do have neck pain/base of skull pain occasionally, but it is not too bad and not debilitating.]
[It is now impacting my ability to use my arm it is scaring me because I do not want to lose the ability to do my job. ]

Hi aeria,
Welcome to NeuroTalk.
You have a lot going on, and I'm sorry you're dealing with so many health issues.

I am pretty sure that I've read posts in the past from members on this PN forum and also perhaps the Autoimmune Forum that had negative blood tests for Sjogren's but ended up actually having the condition. Have you ever seen a Rheumatologist? I'm sorry if you said that and I missed it in your post.

I also would imagine that the low ferritin could have a huge impact but I don't know enough about any of the tests you have been through. Maybe check in PubMed for Iron deficiency or Iron deficiency anaemia and Neuropathy. Lots there.

Also see if your Copper levels were ever checked.

Hey aeria,

Welcome to the Forum. I am so sorry to read about all your terrible experiences and symptoms.
My thinking, (on the same lines as Jomar) is that your hand/ arm/ finger symptoms are related to nerve entrapment and related to your neck base of spine issues.
I also note you have tight stomach muscles (and have ruled out GI tract issues) I just wonder if you would benefit from the use of a Foam Roller. Just lying on it appropriately would stretch your stomach muscles. Tight stomach muscles contribute to poor posture and poor posture may contribute to nerve entrapment by for example Upper Crossed Syndrome. I appreciate you have Ehlers Danlos Syndrome so this may not be valid but working on your neck shoulder area could at least reduce those classic arm/ finger symptoms that are very much associated with nerve entrapment.

Best wishes,
Atty

Welcome aeria.

If you've done research on MCAS, you know it can cause a raft of different symptoms, including neurological. What foods are you restricted from eating?

I believe that excess histamine is at the core of all my strange neurological symptom. You are the only other person I've heard describe this symptom I have..."episodes of numbness, itching and crawling sensation in my temple/scalp area." This is the first sign that I've eaten something I shouldn't. In short order, tinnitus sets in, and then a widespread vibrating/burning, rushing sensation that can run from head to toe. This usually lasts throughout the day and often impacts my sleep. The next morning, tinnitus will be the only lingering symptom, aside from the ever-present neuropathy in my lower legs and feet.

I'm still trying to figure exactly what substance or substances in foods I'm sensitive to. I believe salicylates are enemy number one, but given that I just found out I have a large kidney stone, oxalates are on the table too.

Just curious why and what do you do for it