Navigator: Sally Getting to know me!!!!!

[Guest guest]

Hi , I am 54 and got RP in 74, was told about 200 known cases back then. I had a full blown flare up.The fever that burned you up and didn't go away, the ear that hurt so bad even to look at and such a god awfull purplish red and blown up like a ballon, neck and back pain that NO pain killer would do,. I was lucky my Dr. had seen a case at Mayo , it took 6 weeks to get out of hospital. Had around 6 or so attacks of hoarness and back pain off and for 4 yrs. Good thing they had Prednisone back then. My RP went into remission until 2-99, on the 20th( I'll never forget that date!!) I woke up and my feet were tingling . Within 6weeks it had gone up to my hips, hard to move my feet and the day I went into the hospital I was draging my left foot and my balance was off. After testing they told me I had Transverse Mylitis, when my head Nureo. found out that I had RP he thought my TM was caused by my RP. They put me on Dectatrone , excuse my spelling, which tore into me.gained weight, mouth infection , and wonderful SHINGLES!!!!!!!!!!! Got the shinglles on the inside of my right arm, the whole lenght plus on my right shoulder, talk about pain. Got a chiropracter the get rid of pain but never got rid of the numbness. Has anybody ever had this and the numbness and did you ever get rid of it??? It hurts when I rub my arm against my body still. In 2-00 I went back in hospital again, got Pred. this time , put more weight on . I was told this was from my RP and about 12 had this spine problem, the T M. I take 200mgs. of Lamical for the severe tightness in the back of my legs from the knee down to my toes. Now have the tightness in my feet, atleast I don't have the severe pain with this flare up. I have to use a walker and a scooter to get around and use a recliner, that is how I sit at my computer.You could truthfully call me a numb ass and you would right, hard to sit up in a chair for very long without becoming very,very,very numb down yonder. You may LOL . Got my yearly checkup last Oct. and Dr. told me that most people with T M. ever fully recover. I am very greatfull I'm alot better then when I came out of rehab, came out and went straight home. I'm so gratefull that I can live by myself, if I over do I take it easy for a few days. I do have a great sense of humor and I usually put a good front up for my family, some things I don't tell them. I am sorry that I cann't work and have to rely on them for help in paying my living expensives. It has been a long 3 yrs. You'll have to forgive me as I have only had my computer for a short time , I may get use to it. It is great to find a group of people that know about and share RP, it can be a very nasty,nasty illness and I know alot of what you are going through. I am gratfull that my RP hasn't been a bad as it can be. Thanks for the nice welcome to your group and glad I found you ALL!!!! Looking forward to hearing from some of you and if anyone has a lower spins problem please get in touch. My prayers go out to all and especially to and

, keep your chins up. Friends always Sally

[Guest guest]

Sally, thank you so much for telling us a little about yourself. It is great

to get to know everyone who joins the group. Thank you for all your prayers

and concern for me. I'm doing just fine and will continue to. I think I

just have a few over reactive doctors. LOL

Please keep posting and don't worry about the computer thing. I think I'm

the computer dummy of the group. We learn so much each day. LOL

hugs