Test Results- Normal Small Fiber Biopsy And Emg????

[lewis]

I had a small fiber biopsy and emg done. Both said they were normal with no nerve damage. Everything I have read indicated that having dysautonomia means there is nerve damage and can be seen in these tests. Does not having nerve damage point to a specific cause for my dysautonomia? I feel like I am missing something here. Anyone else experience this?

[Katybug]

Hi lewis,

I don't have nerve damage. I have EDS and MCAS as well as some inflammatory issue that we can't clearly identify and we believe the combination of these things is where my autonomic dysfunction originates.

[Sunshinegirl]

I was recently tested for small nerve damage. I don't have the results yet but the initial test was highly indicative of damage and the dr said it might easily explain my very high heart rate even when POTS symptoms are not immediately present. I read that about 50% of those with dysautonomia have some kind of nerve damage that is evident through testing. The type of POTS/dysautonomia that this occurs in is usually more related to a genetic component or a co-occurring syndrome that has POTS as part of the whole picture. In MTHFR neuropathy is a very common thing and it also impacts the cardiovascular system, hence the high heart rate. So to answer your question, nerve damage is one symptom of a few causes but does not have to be present.

* this is not medical advice* It is just what I have learned through my experience and recent research.

Are you missing something? Well, yes and no. Now you might be able to exclude the causes that have neuropathy as the cause and start looking for causes that do not have this as a primary symptom. That would be the route I would take. One trend I have seen on this forum and in my interactions with others is a striking amount of people who has Lyme or a significant viral infection in the past. I personally have not yet met a person who has Lyme who did not end up with a myriad of puzzling symptoms years later. This is just an observation.

[lewis]

Thanks for the information. Just want to be a little more prepared when I go back to my doctor. I should have mentioned that I do have nerve pain but no neuropathy (according to the emg). I dont have eds or mcas and my doctor wouldn't test me for MTHFR but maybe I can convince her to do it now.

[Sunshinegirl]

To my knowledge nerve pain and neuropathy are not the same. I have neuropathy and that means that I have less feeling in my small nerve fibers because they do not work well. I do have shooting pain in large nerves and twitching in small nerves. so for instance, I can stick my hand in boiling water to get an egg out and not feel burnt. I have to be careful to make sure that I do not keep my hand in for more than a split second or I will get a burn. I have walked on hot pavement and not noticed how hot it was and got blisters. So neuropathy and nerve pain are sort of opposite but you might have both depending on what type of fibers are impacted.

Maybe put out a post that asks about nerve pain and POTS without neuropathy. I wonder if it may not be genetically based per se...like "oh yeah, we know all about that gene malfunction", because these come with a bit more specifics....Not to say that it is not genetic....???? but maybe autoimmune or residual from another disease or illness that messed up your autonomic nervous system. Did you ever have a TBI?

I cant get a short cut to copy and paste here. I will try later. It is a very interesting study that might give you more questions to ask and maybe a new concept of what you are dealing with.

[Katybug]

Hi lewis,

There are quite a few things that can cause nerve pain. For example, my migraines are such that I have allodynia over my whole body. Allodynia is nerve pain in the skin. It is common in people with chronic migraine and they know that somehow the migraine process over-sensitizes the nerves but the exact mechanism isn't understood. I'm not saying this is what you have, it's just an example of one thing that can cause nerve pain. I'll see if I can find some resources for you to start researching various sources of nerve pain.

[Sunshinegirl]

I agree with Katybug. I also get pain to the touch with migraines.

I had the hardest time defining and articulating the different kinds of pain or lack there of and still do sometimes. For me, I had a TBI that causes migraines and sensitive skin also sensitive to pressure. I also have degenerative disc disorder in my whole neck. That pain radiates down my large nerves. I have hypercusis (sp?) that causes my head to feel like it is going to blow. I have bolts of fire that seem to shoot down my big nerves. I have pressure point pain like that of Fibro. I have dulling of pain in extremities. GI motility issues cause pressure and sharp pain.

To start I drew pictures of a cartoon body and began drawing out my symptoms and then gathering as much data around them as possible. This is how I was able to articulate the origin and cause of the pain while in the middle of it. Later on, I was able to interpret the cartoons and bits of data and make sense when I spoke. I found that in the middle of the pain I could not be bothered to try to talk. I made a list of adjectives that definitely applied to me under specific conditions because the forms you fill out or the simple yes or no answers drs want do not do me any justice. I wasted years on those condition specific forms that really only applied to one kind of experience but not all of my experiences. I also hate answering questions that ask me to rate things from 1-10.

[gjensen]

SF biopsies are very accurate, but they are very specific concerning location. SFN can be "patchy". The biopsies do not rule it out, but they can certainly confirm it.

Sweat tests, and tests like QSART can be more revealing.

Personally, I think both should be done.

Not all dysautonomias include nerve damage, and some can be inflammatory in nature. A SF biopsy would show reduced density.

Mine was confirmed by both, but that is not the case for all of us. Some have no evidence of neuropathy at all.

EMG is for large fiber, and is a different conversation.

Keep in mind that I only know enough to get me in trouble.

[gjensen]

Also there does not have to be evidence of damage to have the pain.

[lewis]

The doctor doing the emg told me they can see the small nerves on the emg test but Just not very in depth. He told me they usually do the emg first than recommend the small fiber biopsy if they can tell that the small fibers aren't responding. However I had already had the sfn test done and it was done on the area I have the most pain. I went through the entire peripheral neuropathy list with my neurologist and hit tested for every single thing on that list. But seeing now that I don't have actual neuropathy I need a new list of things that cause nerve pain without having neuropathy. I think the qsart Is on the list of tests my doctor wants. I don't know if it matters but I have no problems sweating whether it be to much or to little, I feel its no different than it was before I started having problems so I don't know if this even matters to whether or not it will show anything?

Also I didn't have a tbi, no autoimmune issues according to my rheumatologist, no illness according to infectious disease. I did have chemotherapy 16 years ago but the emg showed no nerve damage from that and my oncologist said this is a separate issue because the chemo wouldn't make problems show up like this years later, it would have been right away. Still though I have nothing else to blame it on other than that poison.

[SarahA33]

Hi there Lewis,

Have you heard of the qsart that gjenson mention? http://my.clevelandclinic.org/services/neurological_institute/neuromuscular-center/diagnostics-testing/qsart

This was taken from the clinic's website, "The QSART is a test that measures the autonomic nerves that control sweating. The test is useful in When seekng autonomic nervous system disorders, peripheral neuropathies and some types of pain disorders. The test requires a mild electrical stimulation on the skin called iontophoresis, which allows acetylcholine, a naturally occurring chemical, to stimulate sweat glands."

This is also an ultrasound of the peripheral nerve and muscle http://my.clevelandclinic.org/services/neurological_institute/neuromuscular-center/diagnostics-testing/ultrasound-peripheral-nerve-and-muscle

Hope that you are feeling well,if there is anything you need please just reach out to us. When do you go back to your doctor, lewis? These are really specific types of testing -- is it a neuro or someone trained in the autonomic system? Sarah

[HopeSprings]

I have classic SFN sensory symptoms (burning feet) and POTS. I had a very positive skin biopsy, but a few months later a repeat skin biopsy and then another (long story) came back negative. There was no treatment in between and no change in symptoms. I was perplexed as SFN explained many of my symptoms so well. I then had a QSART which was very positive and positive again on repeat. I was diagnosed with SFN and they believe autonomic neuropathy is causing the POTS.

It was explained to me (as Jensen said) that neuropathy can be patchy and therefore biopsy can miss it. I've heard before of other people having positive skin biopsy, negative QSART and vice versa, so I too think people should have both tests. It may not be SFN, but since you do have nerve pain and dysautonomia, I'd want to make sure. See if you can get the QSART. Another one I've heard of is a TST (thermoregulatory sweat test?), but I don't think it's widely available.

[SarahA33]

Good points Naoimi!

Just asked my doctor there a few months back where the "sweat boxe" were just to confirm and he said the Cleveland Clinic & Mayo Rochester

http://my.clevelandclinic.org/services/neurological_institute/neuromuscular-center/diagnostics-testing/autonomic-laboratory


http://www.mayoclinic.org/diseases-conditions/sweating-and-body-odor/multimedia/thermoregulatory-sweat-test/img-20005944 -- just a pic of the powder changing color during/after test.

[Katybug]

My doc here in Baltimore also does sweat testing. It's not the "box" of the bigger clinics but it gets the job done.

[ramakentesh]

I had one positive QSART and one normal one - the positive one didnt correlate with symptoms as i was well at the time.

sfn in pots is patchy and may manifest anywhere - although extremities most common.

there are other potential causes being investigated - autoantibodies blocking alpha 1 receptors, abnormal blood vol regulation via ang 2, epigenetic suppression of net gene.

[lewis]

Thanks for the info. My doc has been gone for two week??? Hopefully she will be back tomorrow. She had mentioned the QSART so i am sure that is next. Does it matter though I have no problems sweating?

I sure would like to figure out my throbbing chest. Hate being able to feel every heart beat.

[lewis]

Thanks for the info. My doc has been gone for two week??? Hopefully she will be back tomorrow. She had mentioned the QSART so i am sure that is next. Does it matter though I have no problems sweating?

I sure would like to figure out my throbbing chest. Hate being able to feel every heart beat.