[Pulse]

Hello everyone!

I think it's finally time to make an introductory post--maybe it will help someone one day. To start, I'm a mid-30s male who has likely been dealing with some form of idiopathic SFN for the past 4 or 5 years. I had this diagnosis confirmed with a distal punch biopsy which revealed a neurite density less than the 1st percentile.

It's hard to know where my story starts, but around 5 years ago, I started noticing patches of hypersentivity/dysesthesia, mostly on my lower body. Fast forward 2 years and with these symptoms getting worse, a back injury finally has me seeing a neurologist who confirmed that my symptoms were not related to the disc bulge they found, but more imagining of my spine, an EMG, and some basic labs revealed no obvious cause of any neurological problems.

I had been attributing my symptoms to poor circulation and maybe some skin allergy/irritation. I thought it wasn't serious, until a few things happened: (1) my feet started feeling cold enough to make falling asleep hard, (2) those hypersensitive skin sensations stopped happening entirely and instead I noticed regions of skin with decreased touch and temperature sensation, (3) decreasing sexual function/sensation, (4) intermittent urinary urgency.

I started to really worry that my neurologist had been wrong about my back (or that I had some other nerve injury), and decided to see a better doctor. Another MRI revealed no changes to my back and no symptoms of nerve damage/compression. My symptoms were bilateral, so it was difficult to blame an injury anyway. A lot of labs were run over the course of a year, while my symptoms slowly get worse for no obvious reason.

The labs revealed nothing interesting besides:
High IGA
High ACE, but no other sarcoidosis symptoms
Almost-low C3/C4

Over time the urinary urgency became a decrease in urinary sensation, and the feeling of cold feet became only an abnormal sensation of temperature. Both of those changes were life-improving, but I suspect they also represented a progression of the problem. And symptom (3) has continued to have a pretty severe effect on my general quality of life.

Finally, a sweat test was abnormal and the follow-up skin biopsy was also abnormal and found a "profound reduction of innervation of epidermis and to a lesser extent, of dermal structures"). With this result, I have been lucky enough to have IVIG approved by my insurance, and I will be starting that treatment in a few weeks.

I do not know if my symptoms are caused by an autoimmune problem, but I guess I am hopeful that they are and that IVIG could make a difference. I have read that an infection can trigger autoimmune problems, and just before any of these symptoms starting, I suffered from a bad flu and subsequent pneumonia that had me feeling weak for a month. It was about two months after recovering that I distinctly remember my first experience of an abnormal skin sensation--a patch of skin on my thigh that was irritated by the fabric of my pants.

[mrsD]

Well IVIG wouldn't be approved unless there was an autoimmune or other immune deficiency present.

Also if you had a pneumonia, you could have received a fluoroquinolone antibiotic for it (Cipro, Levaquin, Avelox).

These antibiotics are quite toxic and implicated in causing PN.

This condition is called "getting floxxed". Recovery from this toxicity is sketchy, with many sites saying it is permanent but a few recent opinions is that after 2 yrs or so there may be some recovery. If you did receive one of the fluoroquinolone drugs, be aware that you can still suffer a tendon rupture anywhere in the body. So do not strain, or lift, or engage in any tension lifting activity for another year or so. However, some people ruptured tendons during average activity, so be careful anyway. These injuries are highly painful and take a long time to recover from.

Sometimes after viral or bacterial infections the immune system goes wonkey and starts attacking the host's tissues. This is where the IVIG may help.

[Pulse]

Originally Posted by mrsD

Also if you had a pneumonia, you could have received a fluoroquinolone antibiotic for it (Cipro, Levaquin, Avelox).

These antibiotics are quite toxic and implicated in causing PN.

Luckily I've managed to avoid them for most of my life (save for moxifloxacin eyedrops 10 years ago before I knew the danger), but azithromycin got me over the bacterial pneumonia.

I have no idea who would accept a fluoroquinolone antibiotic knowing there are alternatives with significantly less risks.

During this ordeal I was subjected to a urodynamics test and they simply hand you an antiboitic pill to take afterwards without saying what it is--It was cipro and I had to request a different one.

[JimJamJones]

Hi Pulse,

i just wanted to say 'hi 'and let you know that i think we are in the same boat. I am an early 30s male whos symptoms started 4-5 years ago as well and they seem to be quite similar to yours. Though i have, maybe a somewhat earlier phase of symptoms 1,2,3 and 4 that you mentioned I also have some dysesthesia issues on my fingertips which have been there from the onset.

As far as i can tell so far, i have idiopathic NLD- SFPN but that just pushes me to keep trying, every day, to figure out if there really is a cause...

[Pulse]

Originally Posted by JimJamJones

Hi Pulse,

i just wanted to say 'hi 'and let you know that i think we are in the same boat. I am an early 30s male whos symptoms started 4-5 years ago as well and they seem to be quite similar to yours. Though i have, maybe a somewhat earlier phase of symptoms 1,2,3 and 4 that you mentioned I also have some dysesthesia issues on my fingertips which have been there from the onset.

As far as i can tell so far, i have idiopathic NLD- SFPN but that just pushes me to keep trying, every day, to figure out if there really is a cause...

Certainly comforting to read about someone having a similar combination of systems, albeit an obviously unfortunate boat to be in.

Have you had a skin punch biopsy?

I have started to appreciate some abnormal fingertip sensation, I think. It's really difficult to say--if anything, it's a reduced sensation of touch and/or temperature threshold. How would you describe yours? And how did you first notice it?

[JimJamJones]

Originally Posted by Pulse

Certainly comforting to read about someone having a similar combination of systems, albeit an obviously unfortunate boat to be in.

Have you had a skin punch biopsy?

I have started to appreciate some abnormal fingertip sensation, I think. It's really difficult to say--if anything, it's a reduced sensation of touch and/or temperature threshold. How would you describe yours? And how did you first notice it?

Hey, no i havent had the biopsy. My doctor didnt see the use of it, but recently ive been thinking i should go back and push for it again.

Regarding the fingertips, the feeling is a quite pronounced burning sensation but only when i use my fingers to tap or push something. I notice it most when texting on my phone or using a computer mouse/ keyboard. I dont have an reduced sensation or temperature threshold issues though and also my blood and EMG tests came back as perfect.

What have you tried so far to improve things? any supplements? diet changes? did anything help?

I had suspicions alcohol made things worse for me but recently ive decided its the lack of sleep that goes after alcohol consumption - (though ive since i reduced my alcohol consumption in any case). Ive also tried lots of supplements but to no avail really. My next plan is probably to go gluten free for a substantial period and see if that helps, if it doesnt though im starting to run low on ideas...

[Pulse]

I should add one more thing for completeness.

About a full year I really noticed any SFN symptoms, I suffered from an acute onset of a plurality of neurological systems, including severe intermittent headaches (which were nothing like the few migraines or other headaches I've head--these were very localized unilateral pains), sensitivity to bright lights, blurred/difficult vision, difficulty speaking, alcohol intolerance, tinnitus, insomnia, short term memory loss, extreme difficultly concentrating on challenging task, and some loss of fine motor skills (my handwriting suddenly became terrible).

Prior to this acute onset I had been feeling 'off' for a few months, but had none of the above systems.

I went to the doctor a few days after this started and had an EEG and a brain MRI, but everything looked fine.

After a few months of hell, I could appreciate that the symptoms were decreasing and becoming more episodic, and they continued to improve over the next 3 years. They are basically gone as of today, except for some mild tinnitus and insomnia. (neither of which I ever had before this started).

Because of this, there was a concern about neurosarcoidosis--it can cause most of the above systems. However, my brain MRI was normal, as was a chest x-ray.

Obviously this could have no connection to SFN, but I have no idea.