I had my nerve test today on my leg and hand. And it came back awesomely fine. As in I have absolutely no neuropathy.
But it is one of those things that is weird because then you’re all like What the Heck is going On then. But, yeah, no idea. But it has been going on for a long time, just getting weirder now.
Which is good but somewhat weird
What is sort of confusing about those results is that I have been told by more than one neurologist since 2011 (I had to look that up on here) that the numbness/tingling/lack of sensation in my right hand that spontaneously happened was nerve damage. They all had a theory as to What caused it but it seemed pretty idiopathic to me since none of those theories made any sense. What they do have in common with my doctor at the time is that none of them did this test to confirm it actually was peripheral neuropathy.
So… turns out that isn’t what it is. I literally have no idea what it is. It is very confusing, to be honest. I wish they Had done Something back then when it was like really bad so they could have figured out what the heckballs was up with that. But they didn’t. So we all have to be befuddled about the whole thing.
If all else fails blame the fibromyalgia. Just kidding, but in this case… actually maybe. The paresthesia in my legs, while intense, also had no actual cause and I concluded it must be the fibromyalgia. Now this. But it turns out this Negative EMG/NCV test Doesn’t determine if you have Small Fibre Neuropathy.
And that is the sort seen in fibromyalgia.
symptoms of small fiber sensory neuropathy are primarily sensory in nature and include unusual sensations such as pins-and-needles, pricks, tingling and numbness. Some patients may experience burning pain or coldness and electric shock-like brief painful sensations. Since SFSN usually does not involve large sensory fibers that convey balance information to the brain or the motor nerve fibers that control muscles, these patients do not have balance problems or muscle weakness.John Hopkins
So… that could be it? I literally have no clue. But very viable explanation since there are a lot of common symptoms with peripheral neuropathy and small fibre neuropathy. And fibro does like to AMP up our symptoms. So this is entirely possible. Even probable.
Since the EMG/NCV only picks up large fiber dysfunction, one can certainly have a negative EMG/NCV and still have peripheral neuropathy.
Just small fiber peripheral neuropathy – not large fiber peripheral neuropathy.
If someone has the signs and symptoms of peripheral neuropathy and they get a normal EMG/NCV, there is testing that can be done for small fiber neuropathy. It’s a tissue biopsy where a small plug of tissue is taken and sent off to a lab. In the lab the tissue is stained and the small fibers are literally counted under a microscope. (Sounds like a thrilling job)Realif
Multiple sclerosis also often causes symptoms in the extremities, but because it is a central nervous system (brain and spinal cord) disorder it typically will not be detected by electrodiagnostic tests (which primarily evaluate peripheral nervous systems).EMG solutions
So there is That still lingering question. But my neurologist is positive I do not have MS. I do have an MRI coming up in April and if those lesions have not changed at all then all good on that front really. Unless my brain has spontaneously imploded into a black hole… then that isn’t good. But I don’t think it would be MS either. By now, I would have other indications. Like he said I would. So I don’t think this is probable, just that it can’t entirely be ruled out due to symptoms and the existing lesions- better safe than sorry to keep an eye on it with MRIs. But I think he is right about it for sure.
I was curious if my hypermobility in my neck has been causing some of the new issues I have been having. Not my old ‘nerve damage’ in my hand that actually isn’t even nerve damage- but, hey, maybe causing that too. Neck instability can be an issue with hypermobility. And then there is the whole Chari Malformation possibility. I set up an appointment with a rheumatologist to rule these out or investigate the possibility.
I have ignored the issue for too long because hypermobility disorders like EDS (ehlers-danlos syndromes) are rare and I found even my symptoms as they were when I was younger were ignored and no one ever knew what to do about that sort of pain or issues. So I didn’t think there was even a point in persuing whether I had hEDS or not. But I suppose I better just to rule out potential issues (If I do not have MS- things like a chiari malformation and its complications can cause a lot of similar symptoms I am experiencing. It is rare though so- just ruling all that out. Just in case my brain is falling out of my head. That wouldn’t be cool.
Anyway, if it is a neck instability issue they didn’t do the test up in my neck and spine so I have no idea if that is causing issues. Obviously, with migraines and my hypermobility, I do get a crapton of neck pain. And it has caused some issues with nerves Before that led to a crapton of physio.
I want to rule those out because I just never paid attention to those issues beyond sprains, the pain in my joints, some dislocations… that deal. And maybe I should have insisted on having a rheumatologist look at me after the age of 16. So, yeah, rule it out and what remains would be Boom, fibro.
Or I don’t know- maybe Psychological Dysfunctional Brain Syndrome. Okay, I made that up. But there always is the psychological component to health issues. One never knows. Although predominantly I have ignored the two major symptoms that cropped up back in the day so if my mind is trying to tell me something I am not getting that message. I tend to tune out anything that isn’t painful or not in any way interfering with my existence.
Anyway, clearly it is a very good idea if you have neuropathy symptoms to get this test. As I did not. Because it may show you do which then means you can go and see what they say for that. Or like me, they may say you don’t and that means they have to figure out the cause of those sensations. I should point out I only did foot and hand, right side. But there are other areas that can be done. Like maybe I should have had the neck done. But definitely other areas of the body like the neck and spine can cause issues as well, naturally. So I was tested for end point of the nerve. But I guess they can look at the start point as well if they think that is where the problem is… like maybe your spine may be the cause. I have no idea, but there are other areas they can test for sure.
Either way, this is really good. It shows what I Do Not have. And not only is that not peripheral neuropathy but I guess it also is not other things that can show. From what I looked at there are a lot of causes for neuropathy you can be sent for that test because of. But also ALS can show on there? Not sure what that is showing but it was on the list of things it looks at. So your doctor can eliminate some things off the list anyway.
And also it is good I do not have nerve damage. I had, when the hand went weird way back when, wondered why that would just randomly happen for no reason. Not that it can’t- just that it happened strangely. So I am glad nerves are doing what they should be doing. Thumbs up, nerves!
See more posts
Peripheral neuropathy: The first doc appointment– when my hand numbness started in 2011
Small-fiber neuropathy and fibromyalgia
Could Fibromyalgia have autoimmune demyelinating cases (reprint)