Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Hi Sab.... Did your doctor ever tell you what antibodies you carry when they ran the panel? When I saw the eye doctor he said that myositis in the eyes is not that uncommon especially in people with a more advanced disease. I just wish more doctors would reconize that instead of telling people they just need new glasses and at least them them it could be myositis. I can have perfect vision one minute and the next it can be so blurry..... it goes back and forth. It's going to be interesting to see what this neuro eye doctor has to tell me. I took my walk this morning... so I think I'll just do that for the mean time. Before summer hit I was up to a half mile a day which was pretty good for me. While walking, I would breath in as much as I could and blow it out slowly.... just doing that I was able to raise my score up to 80. When the heat hit, I started to go down hill.... I'm hoping with the cool weather coming on I'll be able to get my scores back up there again. I have an oxgen machine that I use at night time....my levels still drop too low when I'm sleeping to be without it. I think this disease can affect a number of different parts of our body that doctors use to think it wouldn't. Like you, when I was finally diagnosed it explained allot of things that were happening to me. I wasn't crazy to begin with. Before being diagnosed I must have passed out a dozen times in my field because my heart did flip flops... felt like a rush of blood leaving my body. Once diagnosed and on the prednisone all that went away. Now though, the flip flops of my heart are returning again. I've learned to give a good cough to put it back into sinc. Pretty weird if you ask me.... but I know Myosits can affect your heart. Since quiting the prednisone I've noticed my body, hands and back hurting more. Of course, I also didn't take any Advil for two nights in a row.... forgot to put them in my pill box. I'm in need of a brain transplant also. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Hi Vicki, No, the doc didn't tell me what antibodies I had when he tested me. I have the results someplace here, I'll check. I am still waiting on hospital records from the muscle biopsy too. When you go to the doc, ask about mitral valve prolapse. In my ex-profession I learned a lot about medicine. MVP can cause the heart fluttering and dizziness. I have also heard that fluttering can be momentarily halted with a Valsalva maneuver (or what you are doing when you cough) with some causes. When I took prednisone before for the lung problems, I had back pain while on it. When I stopped taking it, things finally settled down after about six months. Maybe the prednisone just needs to get out of your system and your hand and body pain will get better. If that is the case, I hope it doesn't take long for you to find relief. Oh, these darned muscles! SAB SAB - Antibodies Hi Sab....Did your doctor ever tell you what antibodies you carry when they ranthe panel? When I saw the eye doctor he said that myositis in the eyes is not thatuncommon especially in people with a more advanced disease. I justwish more doctors would reconize that instead of telling people theyjust need new glasses and at least them them it could be myositis. Ican have perfect vision one minute and the next it can be so blurry.....it goes back and forth.It's going to be interesting to see what this neuro eye doctor has totell me. I took my walk this morning... so I think I'll just do that for the meantime. Before summer hit I was up to a half mile a day which was prettygood for me. While walking, I would breath in as much as I could andblow it out slowly.... just doing that I was able to raise my score upto 80. When the heat hit, I started to go down hill.... I'm hoping withthe cool weather coming on I'll be able to get my scores back up thereagain. I have an oxgen machine that I use at night time....my levelsstill drop too low when I'm sleeping to be without it. I think this disease can affect a number of different parts of our bodythat doctors use to think it wouldn't. Like you, when I was finallydiagnosed it explained allot of things that were happening to me. Iwasn't crazy to begin with. Before being diagnosed I must have passedout a dozen times in my field because my heart did flip flops... feltlike a rush of blood leaving my body. Once diagnosed and on theprednisone all that went away. Now though, the flip flops of my heartare returning again. I've learned to give a good cough to put it backinto sinc. Pretty weird if you ask me.... but I know Myosits canaffect your heart.Since quiting the prednisone I've noticed my body, hands and backhurting more. Of course, I also didn't take any Advil for two nightsin a row.... forgot to put them in my pill box. I'm in need of a braintransplant also.Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Hi Vicki, No, the doc didn't tell me what antibodies I had when he tested me. I have the results someplace here, I'll check. I am still waiting on hospital records from the muscle biopsy too. When you go to the doc, ask about mitral valve prolapse. In my ex-profession I learned a lot about medicine. MVP can cause the heart fluttering and dizziness. I have also heard that fluttering can be momentarily halted with a Valsalva maneuver (or what you are doing when you cough) with some causes. When I took prednisone before for the lung problems, I had back pain while on it. When I stopped taking it, things finally settled down after about six months. Maybe the prednisone just needs to get out of your system and your hand and body pain will get better. If that is the case, I hope it doesn't take long for you to find relief. Oh, these darned muscles! SAB SAB - Antibodies Hi Sab....Did your doctor ever tell you what antibodies you carry when they ranthe panel? When I saw the eye doctor he said that myositis in the eyes is not thatuncommon especially in people with a more advanced disease. I justwish more doctors would reconize that instead of telling people theyjust need new glasses and at least them them it could be myositis. Ican have perfect vision one minute and the next it can be so blurry.....it goes back and forth.It's going to be interesting to see what this neuro eye doctor has totell me. I took my walk this morning... so I think I'll just do that for the meantime. Before summer hit I was up to a half mile a day which was prettygood for me. While walking, I would breath in as much as I could andblow it out slowly.... just doing that I was able to raise my score upto 80. When the heat hit, I started to go down hill.... I'm hoping withthe cool weather coming on I'll be able to get my scores back up thereagain. I have an oxgen machine that I use at night time....my levelsstill drop too low when I'm sleeping to be without it. I think this disease can affect a number of different parts of our bodythat doctors use to think it wouldn't. Like you, when I was finallydiagnosed it explained allot of things that were happening to me. Iwasn't crazy to begin with. Before being diagnosed I must have passedout a dozen times in my field because my heart did flip flops... feltlike a rush of blood leaving my body. Once diagnosed and on theprednisone all that went away. Now though, the flip flops of my heartare returning again. I've learned to give a good cough to put it backinto sinc. Pretty weird if you ask me.... but I know Myosits canaffect your heart.Since quiting the prednisone I've noticed my body, hands and backhurting more. Of course, I also didn't take any Advil for two nightsin a row.... forgot to put them in my pill box. I'm in need of a braintransplant also.Vicki Quote Link to comment Share on other sites More sharing options...
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