Re: N. Member a few answers

[Guest guest]

Hi Barbara, I'm Sally, was 31 when I got RP and it was a Dermatologist too that knew what it was, he saw a case at the Mayo Clinic. I had all the classic symstoms and then small flare ups for the next 3-4 yrs. I've had about 4-6 attacks of hoarsness and that's what worried me, my voice got a little deeper. I thought I never would see RP again after 13 yrs. but It came back in the form called Transverse Myelitis which affects the spine. I was told last Oct. that I would not get any better then I am now. Boy if that doesn't suck, I'm hoping to find out more and see how others are doing, been told not many have this. Each person has their own bout with RP and some react to treatments better then others. Atleast you have found a great group of people who are really thinking and tossing ideas around. One day they will find the answer and til then we'll LOL and support each other!! Best thing is to get a dr. that knows about RP , that is the main key and trying different meds til you find the treatment that works for you. I guess the trick is to learn what to look for when you start to flare up and get to the dr. right away. I wish you the best and we'll help all we can. Oh, I'm sure you have been told but make sure you take your meds on time and always ask how to come off all meds. Love ya Sally