Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Larri, welcome to the group... I have just posted you back and now have seen that you are joined to the group... Let me know if you get this e mail... This is where you can post to the entire group... You can also post to me privately. Welcome again....looking forward to getting to know you. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Larri, welcome to the group... I have just posted you back and now have seen that you are joined to the group... Let me know if you get this e mail... This is where you can post to the entire group... You can also post to me privately. Welcome again....looking forward to getting to know you. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2001 Report Share Posted December 24, 2001 thanks for writing . I am in the middle of all this and it is the worst. I am going to the university of Missouri. I went in because my primary doctor said I had to many ear infections and whamo, the doctor says I think this is what you have. Feb 6th I go for an MRI to see how much damage has been done to my body so far. Oh goody. They want me to take 800mg of motrin to start 4 times a day. Seems to me I should have a definite dx before they start all this but I will try to be good and comply. The doctors do not seem to know much about this thing Write again when you have time and thanks for the support. Not many seem to think you are sick if you don't lose a leg or two that they can see, grin Larri Welcome Larri > Larri, welcome to the group... I have just posted you back and now have seen > that you are joined to the group... Let me know if you get this e mail... > This is where you can post to the entire group... You can also post to me > privately. > > Welcome again....looking forward to getting to know you. > > hugs > > > > 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...
Guest guest Posted December 24, 2001 Report Share Posted December 24, 2001 thanks for writing . I am in the middle of all this and it is the worst. I am going to the university of Missouri. I went in because my primary doctor said I had to many ear infections and whamo, the doctor says I think this is what you have. Feb 6th I go for an MRI to see how much damage has been done to my body so far. Oh goody. They want me to take 800mg of motrin to start 4 times a day. Seems to me I should have a definite dx before they start all this but I will try to be good and comply. The doctors do not seem to know much about this thing Write again when you have time and thanks for the support. Not many seem to think you are sick if you don't lose a leg or two that they can see, grin Larri Welcome Larri > Larri, welcome to the group... I have just posted you back and now have seen > that you are joined to the group... Let me know if you get this e mail... > This is where you can post to the entire group... You can also post to me > privately. > > Welcome again....looking forward to getting to know you. > > hugs > > > > 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...
Guest guest Posted December 24, 2001 Report Share Posted December 24, 2001 In a message dated 12/24/01 10:29:11 AM Pacific Standard Time, larri@... writes: << hey want me to take 800mg of motrin to start 4 times a day. Seems to me I should have a definite dx before they start all this but I will try to be good and comply. The doctors do not seem to know much about this thing >> Larri, you are right about that..... not too many DO know about RP...but it is the goal of the RP Foundation (which is separate from this support group) to let them learn about it. You seem to have been diagnosed pretty early and that is a good thing. I know it sound like a lot to take (800mg) but see if it helps.. It is better than prednisone. at least for the side effects. Be sure to ask your dr for something to protect your stomach like Prevacid or Prilosec...something... You don't need ulcers on top of this. LOL Don't be scared.. there are 200 of us in the group and we are all here for you... Please remember that... when you get scared or read something that scares you... just ask the group... We can always cheer you up. LOL Can't wait to get to know you better... Tell us a little about you. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2001 Report Share Posted December 24, 2001 In a message dated 12/24/01 10:29:11 AM Pacific Standard Time, larri@... writes: << hey want me to take 800mg of motrin to start 4 times a day. Seems to me I should have a definite dx before they start all this but I will try to be good and comply. The doctors do not seem to know much about this thing >> Larri, you are right about that..... not too many DO know about RP...but it is the goal of the RP Foundation (which is separate from this support group) to let them learn about it. You seem to have been diagnosed pretty early and that is a good thing. I know it sound like a lot to take (800mg) but see if it helps.. It is better than prednisone. at least for the side effects. Be sure to ask your dr for something to protect your stomach like Prevacid or Prilosec...something... You don't need ulcers on top of this. LOL Don't be scared.. there are 200 of us in the group and we are all here for you... Please remember that... when you get scared or read something that scares you... just ask the group... We can always cheer you up. LOL Can't wait to get to know you better... Tell us a little about you. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2001 Report Share Posted December 27, 2001 Hi Larri! Welcome to the group! Are you a female Larri, or a male Larri? I had an aunt Larri, so I just want to make sure! I too am new to this diagnosis, three weeks to the diagnosis and in my first full body flare. It is hard when people can't see the pain and fatigue for themselves, that is why I have found this group to be so very helpful. Plus, when the doctors don't know much, it helps to hear the range of experiences. Welcome and feel free to email me if you want to talk, also, or I'll watch for your posts at this site. Take care of yourself! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2001 Report Share Posted December 27, 2001 Hi Larri! Welcome to the group! Are you a female Larri, or a male Larri? I had an aunt Larri, so I just want to make sure! I too am new to this diagnosis, three weeks to the diagnosis and in my first full body flare. It is hard when people can't see the pain and fatigue for themselves, that is why I have found this group to be so very helpful. Plus, when the doctors don't know much, it helps to hear the range of experiences. Welcome and feel free to email me if you want to talk, also, or I'll watch for your posts at this site. Take care of yourself! Quote Link to comment Share on other sites More sharing options...
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