Hi everyone,

Well, after a year-long medical saga, idiopathic SFSN is finally my diagnosis. I'm not sure how "standard" my symptoms are though. I'm just going to list them as briefly as I can:

- My lower left leg has tingled and twitched for about 30 years. No known cause. I described the tingle as being more like I was standing on a vibrating floor. Sometimes it was painful at night.

- Last year, it felt like it was getting worse, and then all of the sudden it moved in to my right leg as well.

- An additional symptom is now that I have referred sensation into my feet. If I rub any body part from my mid-torso on down, the electrical sensation in my foot on that side of my body gets stronger.

- I'm also lucky to be "blessed" with this prickly feeling from head to toe on occasion, and when it's at its worst, I literally feel like I'm plugged into an electrical socket and am buzzing. And also when at its worst, I have bizarre sensations in my temples.

- Another feature is cold sensitivity. I'll get chilled to the bone for no reason.

Do these symptoms sound familiar to anyone? I've seen anyone report a decade-long problem that suddenly got worse.

I've had all the usual tests to rule things out, but have not had a punch test. My neuro said it would confirm the diagnosis, but wouldn't tell us why this was happening. The only stone left unturned in my neuro's mind in the possibility of an activated virus like Epstein Barr or Herpes Zoster, both of which are known viruses I have. (The symptoms in my left leg started about two years after a multi-month bout with mono.)

I'm also not ruling out some poorly understood metabolic issue, a hormonal issue, or even something going on in my spine that's impacting my spinal cord/CNS function even though MRIs show nothing. (Why mid-torso down for the referred sensation?)

Has anybody had any luck going from idiopathic to a known underlying cause? As I've read something 50% of all cases of SFSN are idiopathic, there must something big they're missing.

Any thoughts appreciated. Even just having people to commiserate with would be comforting. I've felt like I was losing my mind for awhile.

Janie
Baltimore