Small Fiber Neuropathy...

[comfortzone]

I'm trying to figure out where my newly dx'd small fiber neuropathy figures in - as far as my symptoms.... Then I got to thinking - how many of you have it? Did your doctors share the reason for your SFN or was it just 'idiopathic' and no real reason surmised or contemplated.......? Is it a true common finding with dysautonomia? Or is it only with EDS-HM dysautonomia patiens? Or is it because of blood glucose/insulin issues?........

I get sooooo confused lately about this mess....... Does EDS cause it? Does POTS cause it?

Sorry if I already asked this...awhile back - I can't remember my name lately! Too much stress lately...

[sugartwin]

Small fiber neuropathy is one of things that can cause POTS. 'Small fiber' refers to the un-myelinated nerves that regulate the autonomic nervous system. When they are damaged, dysautonomia can result.

It can be idiopathic or secondary to something else. It can be secondary to diabetes, multiple sclerosis, celiac disease and other autoimmune diseases. Also, some non-autoimmune things like chronic long-term alcoholism and HIV. From what I've read I get the impression that many, if not most cases are idiopathic.

Mine was caused by a virus that was so severe that my body attacked itself in its attempt to rid itself of the infection. My body began by attacking the long nerves in my feet and then moving upwards. To this day, my feet (and a short distance north) don't sweat at all. (My sister jokes that I can go sock-less and not have to worry about smelly feet.)

I don't think EDS is one of the causes. While you can certainly have both (I do) not all patients with EDS have small fiber neuropathy. What is causing dysautonomia in EDS patients is still a subject of some contention.

This is the impression I got from my POTS-doctor when my results came back positive for small fiber neuropathy and we discussed in a follow-up appointment.

[janiedelite]

At Mayo, the doc surmised that my SFN was caused when I had mono in 2006. That's what I was told.

However, my mom also has SFN so I think there's probably a genetic component in my case as well.

[Christy_D]

My son has small fiber neuropathy on his stomach and abdominal area. He also has POTS. I wasn't given a reason for the sfn, just that it adds to the evidence of the diagnosis of POTS(something to that effect). They gave my son a thermoregulartory sweat test, and he did not sweat on his torso or upper left arm. He had reduced sweating in other places.

My son did not have mono or some virus. His was a gradual increase of symptoms over 3 years before it became a daily event. They think his POTS is hereditary. It became daily after a 7 inch growth spurt.

Christy

[Chaos]

I was given the "idiopathic" SFN diagnosis when all the possible "causes" for it were ruled out that they were able to test for at Cleveland.

I too have EDS-HM.

[Sallysblooms]

Ii don't have it. My feet were having problems though. I also didn't get enough circulation since I was too sick to walk for a long time. My doc told me to add Lipoic Supreme to my supplement regime. It helps nueropathy. It worked great I also make sure to move my legs a lot now.

[issie]

I might can answer this next week. I'm to have a nerve biopsy next week. The doctor seems to think that some autoimmune issues may be involved or in my case genitics.

[comfortzone]

I might can answer this next week. I'm to have a nerve biopsy next week. The doctor seems to think that some autoimmune issues may be involved or in my case genitics.

Hi issie -- Are you going to have a big nerve biopsy or the skin biopsy that looks at the small fiber nerves? I trust you are in good hands and do please keep us updated on what they do and how you fare....and hopefully some promising results for having had the biopsy.

[comfortzone]

Well I guess I now understand that somehow eds and sfn seem to go hand and hand for a good measure of people but not all.... and that Pots goes with sfn too and that eds goes with pots..........No wonder I'm confused.

it seems bendy, dizzy, and burning, tingly, painful nerve pain are the order of the day for people with this cluster....

i feel a song coming on....

i have to make jokes so that i don't cry lol

thank you to all who wrote to explain what they know about this thing called small fiber neuropathy... i'd love to deny it - but it's there - and i have the skin biopsy scars to prove it. dang i thought they would be teeny tiny as the size of a pen tip is all the skin they took in two places........but it fills in from the middle and now on my skin are two very red kinda big dots -- there goes my modeling career! just kidding the joint replacements and extra poundage took care of that awhile back...

hugs

[issie]

I might can answer this next week. I'm to have a nerve biopsy next week. The doctor seems to think that some autoimmune issues may be involved or in my case genitics.

Hi issie -- Are you going to have a big nerve biopsy or the skin biopsy that looks at the small fiber nerves? I trust you are in good hands and do please keep us updated on what they do and how you fare....and hopefully some promising results for having had the biopsy.

I'm having the small fiber test of the skin. They said it would be like a punture and they will do it in two places. Also, the sweat test and some breathing test. I was hoping that they checked for noriephi - but this doc doesn't do that test. I really would like to have that checked - maybe he will know of someone that does it. It will be my second visit to him - just doing test and ruling out. Nothing firm yet. Thanks for asking - I'll try to keep you posted. He had wanted to do some genitic testing - but come to find out - my insurance isn't a provider for the testing. So, for now - that's on hold. Just putting more of the puzzle pieces together.

[comfortzone]

This is just an idea - but I'm of course not sure how your insurance works but could you maybe have the doctor write a prescription for your lying and standing serum catecholamines to be done at the Mayo Clinic? I remember the department that did that test was actually endocrinology - and the nurse has you lie down in an empty room with the lights dimmed for you to not move and just relax for 30 minutes - prior she places a hep-lock iv in your antecubital space or hand I suppose. They then sneak in at 30 minutes and draw the blood from the heplock...next they do a set of vitals...then have you stand. After ten minutes they then get vitals again and draw from the heplock the second standing blood sample. The blood needs to be handled appropriately or the test is invalid - and that means on ice and straight to the lab - who then sends it off to Rochester I think.

Or if that doesn't work - could you phone a lab locally in the Phoenix area to see which major lab will do the test in house for you if you bring in an RX for it? The doctor likely knows who the major labs are - and which ones will do specialty testing at the lab building -- then if they have to send it out --- you will at least have had the chance to check with your insurance to see if that lab facility is one that your company accepts - then it doesn't matter where they send it you are still covered.

Warning on the nerve biopsy - it's pretty dang expensive - and not many labs do it. The one Mayo chose was Therapath. I got a bill for about 5 Grand for it and panicked. When I called Therapath in NYC the lady told me to NOT panic. She said insurance companies always always deny the claim. So when that happens Therapath says they will do all the fancy footwork to get it covered for you = submitting the appeals etc. At last check - I called my insurance company and they said I had met my out of network deductible...I was like 'impossible' I always go 'in-network' then she says, 'no it says here Therapath' 800 dollars of deductible met. Gulp. I asked how much insurance paid to therapath then - she said just a couple hundred dollars.

So I'm not sure if Therapath will take what insurance pays as payment - the woman on the phone told me that 'we will take care of it' but not sure what that means.......so I'll sit and wait it out I suppose!

[potsgirl]

Wow! I hope that's not the case with my insurance and Therapath. I had the skin biopsy done a couple of weeks ago at Mayo Scottsdale, and I'll find out the results this coming Monday, but they're pretty sure it's small fiber neuropathy.

As for causes, I typed in 'small fiber neuropathy' and looked at Cleveland Clinic's site and it was very informative about both the condition and the causes. They say that if you can figure out the cause, then they can attack that and the pain and other symptoms won't normally be so bad. Otherwise, most people with sfn tend to get slowly worse over time. Of course, there are many people who are 'idiopathic' for it. My doctor there thinks it's probably related to my autonomic dysfunction, but I'll know more Monday.

I tried Lyrica for pain, and that didn't work. Right now I'm taking Percocet which takes the edge off. I guess next up is Neurontin, which hasn't worked very well for me in the past. Do you take anything?

[issie]

Well, back from the doc. The neurologist I'm seeing is Dr. Todd Levine - he does the pathology in office. They have set up a lab and an infusion center and autonomic testing site. I had the QSART test and a breathing test and a poor man tilt with the biopsy for the small fiber done today. It wasn't so bad. I should get my test results from everything but the biopsy next week they said. I got some of my labs back and my Igg is really low. So there are some autoimmune things going on. They haven't explained it to me yet - so I'm just guessing as to what it means. The norepi test I had was just a sitting draw at a regular lab and it was a little on the high side. I don't know what it would have been from standing - so I don't know if that is conclusive or not. My vitamin D levels are still low - in fact they haven't come up from before I started supplementing. On the QSART test my arm looked like it responded but my legs didn't very much. She turned the screen around so I could watch it. On the breathing test, I wasn't able to hold the breath very long at all. I don't know what that means. But, that's all I know for now.

Issie

[arizona girl]

Hey, Issie, glad to see you got in with Levine and things are moving along. I can already tell you are benefiting from their new autonomic testing lab they have put in place this year. When I went all they did was labs and the biopsy. So I can see that he has added all those other tests.

Interesting that he has added a poor man's tilt. I had asked if he was going to be doing the TTT's now, when he told me about the new lab and he said they were adding the QSART, but now looks like he as at least adding in the poor man's.

What where your IGG numbers? Mine where low too. Which how I insurance approved me for the IVIG. Even though I had the small fiber neuropathy, insurance denied IVIG for that. My low immuno's showed I had Common Variable Immune Defciency (CVID)and one of the hall marks of it, is that it is often associated with autoimmune conditions. While small fiber can be idiopathic, when it is found along side CVID it is usually autoimmune based. They just haven't been able to identify the autoantibody causing it yet. There are a lot of other autoimmune condititons associated with CVID.

Note to that when I was on pheresis with the small fiber, my bp/hr normalized. Which showed it was autoimmune. My BP/HR are acting up again on the IVIG. My immuno's have normalized, but the IVIG product I've been on has been causing known side effects and is effecting my BP/HR. We are switching my IVIG product to privigen and hope that will stop the side effects.

You will most likely qualify for IVIG, due to the low immuno's. CVID is usually treated by an immunologist who will do further testing like an IGG sub panel and vaccine challenge testing. These should be done before starting IVIG. I trust Dr. Levine but he is not an immunologist and he didn't do the tests I just mentioned on me. Then again he may not have wanted to because if those tests come back normal, it might disqualify you from getting IVIG and he knew that is how he wanted to treat me. I also agree that the IVIG is the best course for me. With autoimmune SFN, it will take longer for IVIG to correct that.

Good luck with your results, hope they help get you into a good treatment program.

[issie]

My Igg was over 130 points below the low lab number. I'm glad to know there is another test that can be done to confirm the need for it.

I'm almost certain that the small fiber neuropathy is going to be positive - I have so much numbness in my feet and legs. Like I've said before, I have to sleep in my support hose or they hurt so bad I can't sleep. I still have issue even with them. But, I do have the EDS and also really bad circulation.

They are going to start doing allot of trials there for different things. It will soon be a world known place. I'm glad I got in before they got so busy. They have already started some for ALS, MS and some others she told me about.

[dsdmom]

My neuro believes mine was caused by an infection - either viral or bacterial (I was very sick when I developed dysautonomia). However, we recently started ivig to see if this helps. Surprisingly my insurance agreed to pay for this - shcoked me and I'm still scared I'm going to get a bill...

One round done (5 days in a row) and now improvement yet. Going to give it a bit even thoug hit's not a ton of fun. The headaches I get are horrendous.

[comfortzone]

dsdmom - sorry to hear about your headaches and such ... hang in there -- maybe as you said it just needs a little time. I know it's hard to be at the mercy of these insurance issues and such too. Somehow I got too much 'natural' igg --- dunno how unless it is from that year I worked in a peds emergency room...I was sick with every virus known to man that year - just as I was ready to quit d/t being so so discouraged and sick of being sick - bam. I got healthy. Since then I only get colds and such say once every 5 or more years. Crazy. Then a doc tested those immune things and I found that number being higher than normal. But still have the neuropathy ... oh well... I am getting older...and older...and older... I overheard this lady at a store today say she was, "older than dirt - & I can't take it anymore" relating about her job... LOL - I was like AMEN sista - know what you mean!

[comfortzone]

Wow! I hope that's not the case with my insurance and Therapath. I had the skin biopsy done a couple of weeks ago at Mayo Scottsdale, and I'll find out the results this coming Monday, but they're pretty sure it's small fiber neuropathy.

As for causes, I typed in 'small fiber neuropathy' and looked at Cleveland Clinic's site and it was very informative about both the condition and the causes. They say that if you can figure out the cause, then they can attack that and the pain and other symptoms won't normally be so bad. Otherwise, most people with sfn tend to get slowly worse over time. Of course, there are many people who are 'idiopathic' for it. My doctor there thinks it's probably related to my autonomic dysfunction, but I'll know more Monday.

I tried Lyrica for pain, and that didn't work. Right now I'm taking Percocet which takes the edge off. I guess next up is Neurontin, which hasn't worked very well for me in the past. Do you take anything?

Sometimes I take something - a mild opiate - or tramadol... but really nothing tackles it... but in fact it's the combination of hurting sometimes everywhere that has me take a medication for the pain. If it was just the sfn - I'd probably be okay - or just this,..... or just that, .... but it's not that easy lol.... it's a head to toe thing literally. Sometimes as odd as it sounds - literally stopping all pain medicine of the stronger kind can be helpful for me. Not sure why that is - but sometimes if I just get so sick to death of pills I quit for a week or so - stubborn and just sick and tired of it all. Then I'll have a day where I need the help of medication to deal with it better - and I'll take it again. I've tried neurontin - a pretty big dose too - it just made me hungry and extra prone to weight gain. Cymbalta - well one pill and I was quite sure I wasn't going that route....felt pretty spacey and odd. Hope this helps!

[potsgirl]

Nowwhat,

Thanks for replying.

I'm glad that your sfn isn't too horrible. My hands and feet usually feel like someone has broken or crushed them, and I can't get the lids off things or function very well until I've had my coffee, some food, and my combo of Percocet and one 50 mg Lyrica. I swear the Percocet does a lot more than the Lyrica, although I'm not on a 'therapeutic dose'. If I go to 200 or 250 mgs, I'm like a zombie and prone to falls. The Neurontin gives me very bad headaches. Does Tramadol do much for you? Anyone have any good pain meds that have worked for them? It's so frustrating not being able to get up to enough medication to really make a difference.

Cheers,

Jana

[issie]

Nowwhat,

Thanks for replying.

I'm glad that your sfn isn't too horrible. My hands and feet usually feel like someone has broken or crushed them, and I can't get the lids off things or function very well until I've had my coffee, some food, and my combo of Percocet and one 50 mg Lyrica. I swear the Percocet does a lot more than the Lyrica, although I'm not on a 'therapeutic dose'. If I go to 200 or 250 mgs, I'm like a zombie and prone to falls. The Neurontin gives me very bad headaches. Does Tramadol do much for you? Anyone have any good pain meds that have worked for them? It's so frustrating not being able to get up to enough medication to really make a difference.

Cheers,

Jana

I'm sure you've read this before, but the combination of Tramadol and Bentyl really does help my pain levels. It has to be both or neither work as well. I also use Tumeric for pain. I just buy the spice and put it in capsules myself. Fish oils help with pain too and help keep the joints lubricated. I don't take the tramadol or bentyl on a daily basis, right now about once or twice a week. When I take them more it seems that the benefit becomes less and when I really need it - they won't work. So by not taking them every day - they help better when it's real bad. I also feel that a little Advil with it helps - it helps inflamation - I'm really afraid of Tylenol and it doesn't help inflamation. Hope you can find a combination that will work for you. It's horrible being in pain all the time - I know. Hang in there.

What happened with you Mayo visit and the possible blood clot?