Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Chuck RP is so rare and I don't know of any support groups for just RP. They might have one for autoimmune disorders there. There are few people in the group that live on the East Coast that might be able to help you more on that subject. If you are a newly diagnosed person you are probably scared to death. The paperwork that these Dr. give us when we first learn we have RP is about the scariest stuff I have ever seen. Most of the things that they hand out are so old that most of it is not true. Yes RP is serious but you will find that each of us are different. There are some people in the group who have had it for several years. I have had it for 7yrs and to look at me you could not tell. To give you a for instants on Doctors and info. My sister went to the Dr. last week and they have been doing several tests. Checking for several disorders and not finding what is causing the problem. The Dr. asked her some questions about RP because there were notes in her chart about it. The Dr. left the room and returned with the all wonderful case photos in their Dr. books. Doctor told her there was no way she could have RP because if she did she would look like the photos. My sister calmly told the Doctor, " My sister has had RP for several years and she doesn't even look like that. " This is why some of the members of the group have started a foundation. They are in the process of getting it all legalized so that we can get the word and info. out to the Dr. about RP. Hope this helps! Now for a little about me and you can tell us all about you. I live on the West Coast in Oregon. I have had RP for over 7yrs. I lead a normal life as far as the RP goes. I have had no major damage like to nose,ears or other areas that RP may affect. Sure I have the aches and pains and flares occasionally but not as severe as it was when I first had RP. Dr. was able to control mine with the meds. Most of the time my problems now are from the meds. Side affects etc. To look at me you would never know how sick I could be or was. That is what makes this RP so tough! Please feel free to post all or anything that you would like. That is what we are here for. Don't be afraid to ask questions or to air your feelings. We laugh, cry, moan and groan. When others are having bad days there is always someone to get them through. Hope this helps and hope someone here has some better ideas for you than I do. Take care and I will be sending good thoughts and prayers your way. Lots of Love Glenda --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.251 / Virus Database: 124 - Release Date: 4/26/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2001 Report Share Posted June 15, 2001 > In a message dated 6/15/01 9:00:02 AM Pacific Daylight Time, cistn@a... > Chuck and , I am also having cramps in the calves of my legs, joint pain and don't sleep good at night either. I have fibro and not sure if this is caused from that or the pred. This feels more like it's caused from the fibro. Prednisone usually helps my joints, but not here lately. Marilyn > > << lso i have to deal with the sleep problems of not getting any, the > leg pain espically in the calf muscles and the joint pain mostly > after i have taken the pred. and i am tapering off it >> > > Chuck, I also have sleep problems. (don't get any) LOL Even my c pap machine > isn't helping. I am having the terrible leg pain and calf pain & joint pain > now. I am trying to decrease my pred. Carmela says she still has it after > coming off pred. Does anyone know how long this lasts? Yes Chuck, sure > does beat the RP, so i won't complain. How are you doing otherwise? Hope > you have a great day. > > C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2001 Report Share Posted June 15, 2001 Hi Folks, Lucy here, buttin in as usual. Ask your Dr. for a prescription for Quinine capsules for the leg cramps and pain in the legs. I take Lasix tablets and I always take a Quinine capsule with it. It sure does help with those leg cramps. I get cramps in my ribs too, I take the Q capsules for all cramps. Hope this helps, Love and Prayers, Lucy Re: Chuck > > > In a message dated 6/15/01 9:00:02 AM Pacific Daylight Time, > cistn@a... > > Chuck and , > > I am also having cramps in the calves of my legs, joint pain and > don't sleep good at night either. I have fibro and not sure if this > is caused from that or the pred. This feels more like it's caused > from the fibro. Prednisone usually helps my joints, but not here > lately. Marilyn > > > > << lso i have to deal with the sleep problems of not getting any, > the > > leg pain espically in the calf muscles and the joint pain mostly > > after i have taken the pred. and i am tapering off it >> > > > > Chuck, I also have sleep problems. (don't get any) LOL Even my c > pap machine > > isn't helping. I am having the terrible leg pain and calf pain & > joint pain > > now. I am trying to decrease my pred. Carmela says she still has > it after > > coming off pred. Does anyone know how long this lasts? Yes > Chuck, sure > > does beat the RP, so i won't complain. How are you doing > otherwise? Hope > > you have a great day. > > > > C > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
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