How did you get diagnosed with neuropathy?

[ChookityPop]

And how are you treating it?

 

[pattismith]

First time I heard about neuropathic pain was from a rheumatologist I was visiting...

I learnt after some time it was a kind of death sentence.... No more investigation, no treatment other than some drugs that would make me worse than how I actually was...

I'm currently doing a trial with Duxoletine.

 

[ChookityPop]

First time I heard about neuropathic pain was from a rheumatologist I was visiting...

I learnt after some time it was a kind of death sentence.... No more investigation, no treatment other than some drugs that would make me worse than how I actually was...

I'm currently doing a trial with Duxoletine.

are you diagnosed?

Ive heard IVIG helping some people.

 

[pattismith]

are you diagnosed?

Ive heard IVIG helping some people.

I'm waiting for my skin biopsy result now, so I may be diagnosed with Small Fiber Neuropathy...

No IVIG available for SFN in my country unfortunately...

 

[Zebra]

Hi @ChookityPop

A neurologist will typically start out with an exam (pink pricks, vibrations, motor strength, etc.) and if suspicious for neuropathy, will move on to the tests mentioned below.

Small fiber neuropathy is typically diagnosed with simple skin biopsies which are sent to a lab for evaluation of nerve fibers density.

Sensory & Motor neuropathies are diagnosed via nerve conduction studies. This is done by sending electrical current down the nerve, but it's not as bad as it sounds. Just odd and uncomfortable.

Good luck to you!

 

[ChookityPop]

Hi @ChookityPop

A neurologist will typically start out with an exam (pink pricks, vibrations, motor strength, etc.) and if suspicious for neuropathy, will move on to the tests mentioned below.

Small fiber neuropathy is typically diagnosed with simple skin biopsies which are sent to a lab for evaluation of nerve fibers density.

Sensory & Motor neuropathies are diagnosed via nerve conduction studies. This is done by sending electrical current down the nerve, but it's not as bad as it sounds. Just odd and uncomfortable.

Good luck to you!

Thanks!

I had emg last year and it was negative. I have crazy on and off burning in the nerves in my arms as well as in my legs.

Im doing a new test soon. But wonder what happens if its negative?

 

[pattismith]

Thanks!

I had emg last year and it was negative. I have crazy on and off burning in the nerves in my arms as well as in my legs.

Im doing a new test soon. But wonder what happens if its negative?

EMG and NCS are normal in isolated Small Fiber Neuropathy. So if you happen to have negative EMG and NCS, it doesn't rule out SFN. Next step is autonomic testing and skin biopsy

 

[RobeAnJa]

I suspect I might have this problem. I get a burning pain in my feet and up on the outside of my lower legs. I have also lost the ability to sweat on my feet. It is not possible to get IVIG for SNF in my country. The treatment is just painkillers then?

 

[JES]

Yes it sucks, the situation with SFN is pretty similar as with ME/CFS, very slim chances of getting any treatment. I had an EMG done and was told there was nothing wrong, even getting a biopsy is challenging in most places. The good news is that I have found SFN a bit more treatable than ME/CFS. The most likely treatment you will get from doctors for nerve pain are medications like Cymbalta and Lyrica, which do in theory work, but I would personally avoid those unless the pain level is pretty high, the trade-off isn't worth it otherwise.

 

[RobeAnJa]

My pain is not too bad, but this is only starting for me I guess. Only been sick for 8 months and this pain came in last two months. My pain almost disappear when I’m up walking. I think blood circulation helps. Maybe it’s part of my low blood volume issue.

 

[ChookityPop]

Yes it sucks, the situation with SFN is pretty similar as with ME/CFS, very slim chances of getting any treatment. I had an EMG done and was told there was nothing wrong, even getting a biopsy is challenging in most places. The good news is that I have found SFN a bit more treatable than ME/CFS. The most likely treatment you will get from doctors for nerve pain are medications like Cymbalta and Lyrica, which do in theory work, but I would personally avoid those unless the pain level is pretty high, the trade-off isn't worth it otherwise.

THanks for the info. You have found SFN a bit more treatable in terms of the options of cymbalta and lyrica?

 

[heapsreal]

First time I heard about neuropathic pain was from a rheumatologist I was visiting...

I learnt after some time it was a kind of death sentence.... No more investigation, no treatment other than some drugs that would make me worse than how I actually was...

I'm currently doing a trial with Duxoletine.

How long have you been on duloxetine and have you noticed any changes?

 

[pattismith]

How long have you been on duloxetine and have you noticed any changes?

I can't say because I started Duloxetine and had flu vaccine shot a week before that made me very bad with a flare of auto-immunity.
So I had to stop everything and then start again Duloxetine a week ago. The only thing I am 100% sure is that Gastro-esophagus reflux + nausea+ bad taste are side effects of this drug for me....even with a very low dosage....

 

[xebex]

I can't say because I started Duloxetine and had flu vaccine shot a week before that made me very bad with a flare of auto-immunity.
So I had to stop everything and then start again Duloxetine a week ago. The only thing I am 100% sure is that Gastro-esophagus reflux + nausea+ bad taste are side effects of this drug for me....even with a very low dosage....

Slightly off topic but what is an autoimmune flare for you?

 

[pattismith]

Slightly off topic but what is an autoimmune flare for you?

my blood neutrophils dropped and I got inflammatory polyenthesitis + my fingers stopped wrinkling in water.

It started two weeks after the vaccine shot. Now, seven weeks after the vaccine, my fingers wrinkles are fully back. I was not sure if the vaccine or Duloxetine was the root of the problems so I stopped Duloxetine and have started it again to see if it makes any difference.

 

[xebex]

thank for those details - my fingers never wrinkle in water - i know its a sign of ANS dysfunction but didn't realize it's a sign of autoimmunity - would you say that means i have autoimmune issue for sure? do you have a source for that? thanks.

 

[heapsreal]

I can't say because I started Duloxetine and had flu vaccine shot a week before that made me very bad with a flare of auto-immunity.
So I had to stop everything and then start again Duloxetine a week ago. The only thing I am 100% sure is that Gastro-esophagus reflux + nausea+ bad taste are side effects of this drug for me....even with a very low dosage....

Crikey your in the wars. Hope things settle down for ya. I just keep getting too many shingles flare ups on my head, so lots of headaches. I think u said other meds too many sides, i was usung doxepin and just puts weight on me and i dont think it helps the nerve pain but helps sleep.

Cheers

 

[pattismith]

thank for those details - my fingers never wrinkle in water - i know its a sign of ANS dysfunction but didn't realize it's a sign of autoimmunity - would you say that means i have autoimmune issue for sure? do you have a source for that? thanks.

No I can't say if your neuropathy is auto immune or not, but it's a possibility to consider.

zero finger wrinkle in water was found in a study of SFN patients:

"The finger wrinkling test can be used as a screening test before tilt table testing" | Phoenix Rising ME/CFS Forums

and SFN can be auto-immune. (I think mine is probably)

Celltrend have a new test for research antibodies involved in SFN, I have already posted it and you answered

Small fibre neuropathy weirdness? | Phoenix Rising ME/CFS Forums

Did you get tested for Sjogren?

 

[xebex]

No I can't say if your neuropathy is auto immune or not, but it's a possibility to consider.

zero finger wrinkle in water was found in a study of SFN patients:

"The finger wrinkling test can be used as a screening test before tilt table testing" | Phoenix Rising ME/CFS Forums

and SFN can be auto-immune. (I think mine is probably)

Celltrend have a new test for research antibodies involved in SFN, I have already posted it and you answered

Small fibre neuropathy weirdness? | Phoenix Rising ME/CFS Forums

Did you get tested for Sjogren?

I havent had any tests yet am seeing internist in 2 weeks hence all the questions, my doc has given up in me and I’ve been waiting about 6 months to see her! I’ll be asking for various autoimmune test Bit I really have no obvious symptoms

 

[pattismith]

I havent had any tests yet am seeing internist in 2 weeks hence all the questions, my doc has given up in me and I’ve been waiting about 6 months to see her! I’ll be asking for various autoimmune test Bit I really have no obvious symptoms

if you have zero finger wrinkles after 20 min in hot water, it's a symptom.
Another easy symptom you can see is lack of hairs on legs

Leg hair loss (leg alopecia), a sign of neuropathy in Diabetes, 2019 | Phoenix Rising ME/CFS Forums

But if you wish to be tested for SFN, it may be better to talk about tingling in hands and feet or burning sensations.