View Single Post
Old 04-11-2016, 11:47 AM
boiler1993 boiler1993 is offline
Member
 
Join Date: Jun 2012
Posts: 157
10 yr Member
boiler1993 boiler1993 is offline
Member
 
Join Date: Jun 2012
Posts: 157
10 yr Member
Default

Sven - I feel like we are similar in some ways. When I first had symptoms, I would only have pain when provoked and by provoked I mean I was rowing crew in college and whenever we did any interval sprint type training I would have an extreme electricity/stinging cover my body when I stopped (odd right) but it was very brief maybe 60 seconds and then would stop - I also had that water running down the legs feeling at random times. Then about a year later I started have sensitivity to my clothes at random times for random periods of time (could be a day, could be months). Most recently, about 8 months ago I moved from college to texas and I had A LOT of sensitivity that was relentless and that's when I went back to medication. Since then I had been doing better until recently with the burning in my feet (which is new for me), more water feelings still (this is always provoked by heat), and some sensitivity returning. I do also have autonomic involvement (tacchycardia which is controlled by beta blockers) and I have reduced sweat production in some spots (according to a QSART). I am thinking it may be time to have a second biopsy to see if what I am seeing externally with symptoms is related to a worsening in nerve fiber density -I too am idiopathic thus far but being 22 I want to find the cause if this is progressing for sure.

Healthgirl - symptoms started about 4 years ago when I was 18. First signs were actually large fiber which has since disappeared (no neuro understands why) and the water trickling on the legs feeling - I was so convinced that I used to pull up my jeans to look for what was dripping. Then I had pretty intense pain when we did interval training for the crew team. But only as soon as we would end a "sprint" my entire body would sting/feel electrocuted. Then the next year I had the sensitivity to clothing appear which would come in spurts for days or months at a time. I also have tacchycardia which is controlled by a beta blocker and reduced sweat production. On and off sensitivity the past few years and then when I moved after college to Dallas I had continuous sensitivity for months sometimes pretty uncomfortable so I started Lyrica which helped pretty well for a few months but now I am wondering if my symptoms were just in a lull as sensitivity has returned somewhat and feet burning has happened along with the water feelings when it is warm out. I said this to Sven but I am thinking it is time for a second biopsy to see if my symptoms are telling me what I think - that the nerves are getting worse/less dense. I am 22 and if this is progressing then I want to do everything I can to find out what is causing it.

Thank you for your replies
boiler1993 is offline   Reply With QuoteReply With Quote