Has anyone here got Small Fiber Neuropathy? - Question

[EtherSpin]

neurologist was an absolute jerk about this and tested for everything BUT small fiber, ignored the medical docs I had with me about my viral history and the potential for those viruses to call SFN - he said , no nerve damage, nothing to see here then when pressed admitted that yes, SFN exists and he just didn't want to test for it and didn't want to glance at my docs and didn't take CFS seriously.

but yeah.. glandular fever at start of my teens left me reacting to temperature change on my skin as if its randomly dispersing tiny hooks lifting up under points of my skin ... im descriptive about that because I've had countless people medical and extended family go "oh so like pins and needles" ... no, nothing like that at all actually

I much prefer to hard slap the area (on the few times it can help) to generate a more predictable pain to distract from the skin sensation that occurs going from cold to a heated environment or from being cold and inactive to suddenly lifting something or exerting e.g. bringing a piece of firewood inside from freezing cold into already toasty house.

sometimes even something like being embarassed can generate the ripping little hook sensation in my cheek/jaw area

 

[bread.]

Hi,
Thanks for posting the informative video.
On 1:03 of the video she mentions Eculizumab as an upcoming possible treatment , has anyone tried this for Small Fiber Neuropathy?

At 1:03 she is not even speaking herself? Where did dou hear that?

 

[dahsar]

At 1:03 she is not even speaking herself? Where did dou hear that?

Someone in my Covid Support Group has taken it and says it’s a godsend. Has been 7 weeks since he has taken it. Too early to tell if it stops working but I’ll keep you posted.

 

[Pyrrhus]

Just want to chime in to say:

Yes, I was diagnosed with Small Fiber Neuropathy too, based on a skin-punch biopsy.

 

[kangaSue]

When I showed him the results of my skin biopsy for SFPN, his response was that small fiber neuropathy is not a cause of muscle fatigue, muscle aches, or any other symptoms except tingling and cold sensitivity in my feet.

That is the case when SFN just affects the afferent (sensory) fibres but it can be a totally different story when it affects efferent motor/autonomic) fibers and the latter is where neuromuscular problems can then occur as well, and often of an autoimmune nature.

In my opinion, being diagnosed with SFN (or Autonomic Neuropathy) warrants also doing antibody testing, something equivalent to the Mayo DYS 2 blood test panel (Autoimmune Dysautonomia Evaluation).
https://www.mayocliniclabs.com/test-catalog/Overview/92121

 

[pattismith]

Currently waiting for the result of my skin biopsy.

I know I probably have SFN, but I wish to have the diagnosis just to show my family that my disease is not just in my head and that I'm not just lazy, selfish, etc...

Apart from that, I don't expect anything from the SFN diagnostic, I don't think my country's medical system will offer much to treat it.

Even if the biopsy is negative, I will still consider that I do have SFN, because skin biopsy is far from the gold standard test we once thought it was. As a french team showed it, it's sensitivity is far from perfect.

 

[daniariete2000]

Just want to chime in to say:

Yes, I was diagnosed with Small Fiber Neuropathy too, based on a skin-punch biopsy.

Hi, I have SFN too. Wich supplements do you use for your SFN ? Thanks

Daniele

 

[wolves2626]

Hi, I have SFN too. Wich supplements do you use for your SFN ? Thanks

Daniele

I have got it too diagnosed through skin biopsy. to this day no supplements did bring great improvements to me and drugs either. they are not a game changer supplements. check your b12 levels which is important for nerves.
I use nac and vitamin d daily and b12 time to time. magnesium, fish oil, alpha lipoic acid are the others that are suggested. feel free to dm. hope you will get better.