Members rememberduane Posted December 22, 2006 Members Share Posted December 22, 2006 Well I'll save the long spiel because most of you know what's been up, but let's pick up from where I left off. After flying home from Edinburgh I went straight to the hospital. They determined my sed rate was insanely high and thought I had something like lupus or rheumatoid arthritis. So they gave me a big shot of steroids and sent in the blood work to test, and gave me short-term prednisone to control the inflammation. My tests came back negative and they figured it was some crazy virus, and that I would be fine when I came off the prednisone. Well, as I started coming off the prednisone, the pain started coming back, so I went to my regular doctor. He checked it all out and said basically I have a textbook case of a condition called polymyositis. Polymyositis is a chronic, degenerative autoimmune disorder in which your white blood cells attack your muscles bilaterally, usually the ones close to the trunk (thighs and shoulders). There's no cure but they can stave it off with long-term high-dose steroids. It eventually does catch up and after years, you typically die from muscle weakness or inflammation in your heart, lungs, or esophagus -- after years of debilitation, because it replaces your muscle tissue with useless scar tissue. It also commonly presents with cancer. So this is what I'm most likely facing. The doctor said he is 90% sure. I get my blood results back Tuesday -- the reason it didn't show in the ANA test before is because it's a different type of autoimmune disorder, and shows up on a creatine kinase test rather than an ANA test. If that test comes back positive, they'll have to do a muscle biopsy to be 100%, but it's basically sure. He is also testing for blood levels that might indicate a malignancy. So I guess this is where I ask for mojo and stuff. I don't even know what to think. There's a part of me that wants it to be this, because this at least gives me years of function, and there are so many worse things it could be. If this comes back negative, we just have to keep searching to figure out what is destroying my muscles and causing me so much pain. I feel like I have a gunshot wound in my left shoulder today, the pain has gotten so bad again the doctor is calling in another short term prescription of prednisone. I'll have to see a rheumatologist soon, but nobody can get me in. It's all kind of a shock.. I'm not even sure what to think. I guess I thought I should keep you guys informed.. HC is a bit like a family. I just hope the steroids will keep me playing guitar for years, because I don't know what I'd do without it. Thanks guys,Chris EDIT: UPDATE Thank you for the responses and prayers and mojo guys. I just got my blood results back from the doctor early. It's NOT polymyositis. My creatine kinase levels came back normal. My metabolics were all normal except my liver, which was like twice what it should be. My white count is slightly elevated, but my sed rate is still insanely high. They also didn't test as thoroughly for a malignancy as I thought they did -- just metabolics. Now we have no idea what is wrong with me, and I can't get in to see a rheumatologist for I don't know how long. The doctor didn't explain what was going on with my liver. I have no idea whats going on and this is worse. I just feel helpless right now. I have an appointment to see the doctor again Thursday, and I will be demanding him to just test for anything and everything it could possibly be. I don't care what it takes, I just want to know. Link to comment Share on other sites More sharing options...
Members The Elitist Posted December 22, 2006 Members Share Posted December 22, 2006 Really sorry to hear this. Stay strong. Link to comment Share on other sites More sharing options...
Members GRIZ Posted December 22, 2006 Members Share Posted December 22, 2006 Prayers sent Link to comment Share on other sites More sharing options...
Members Boltino Posted December 22, 2006 Members Share Posted December 22, 2006 Originally posted by GRIZ Prayers sent I'll be praying for you too bud. Wes Link to comment Share on other sites More sharing options...
Members DeathMonkey Posted December 22, 2006 Members Share Posted December 22, 2006 My thoughts are with you, man! Link to comment Share on other sites More sharing options...
Members JKD Posted December 22, 2006 Members Share Posted December 22, 2006 Holy schmoly! I hope the doc is wrong, if not, best of luck. Positive vibes in the aether from here to you! Link to comment Share on other sites More sharing options...
Members gainfreak Posted December 22, 2006 Members Share Posted December 22, 2006 Chris, My thoughts and prayers are with you. Keep your head up and don't let this get to you. I know that is easier said then done but a positive outlook can do wonders for you. I hope that the Dr. is wrong. I wish you the best of luck. Link to comment Share on other sites More sharing options...
Members RG550 Posted December 22, 2006 Members Share Posted December 22, 2006 Im sorry man. I hope the doctors wrong about his diagnosis. Link to comment Share on other sites More sharing options...
Members adiohead Posted December 22, 2006 Members Share Posted December 22, 2006 lets hope the doctor is wrong! Link to comment Share on other sites More sharing options...
Members JackBootedThug Posted December 22, 2006 Members Share Posted December 22, 2006 stay strong. Link to comment Share on other sites More sharing options...
Members rememberduane Posted December 22, 2006 Author Members Share Posted December 22, 2006 Thank you for the responses and prayers and mojo guys. I just got my blood results back from the doctor early. It's NOT polymyositis. My creatine kinase levels came back normal. My metabolics were all normal except my liver, which was like twice what it should be. My white count is slightl elevated, but my sed rate is still insanely high. Now we have no idea what is wrong with me, and I can't get in to see a rheumatologist for I don't know how long. The doctor didn't explain what was going on with my liver, and he didn't make a followup appointment. I have no idea whats going on and this is worse. I just feel helpless right now. Link to comment Share on other sites More sharing options...
Members Chasteau1 Posted December 22, 2006 Members Share Posted December 22, 2006 sorry to hear that why are you in florida? Link to comment Share on other sites More sharing options...
Members rememberduane Posted December 22, 2006 Author Members Share Posted December 22, 2006 Originally posted by Chasteau1 sorry to hear that why are you in florida? I'm from here, I'm going to school in Edinburgh.Thanks. Link to comment Share on other sites More sharing options...
Members AMSnell Posted December 22, 2006 Members Share Posted December 22, 2006 Good luck and stay strong Theres always the hope in that they find a cure before long! Link to comment Share on other sites More sharing options...
Members Chrisjd Posted December 22, 2006 Members Share Posted December 22, 2006 Originally posted by GRIZ Prayers sent Link to comment Share on other sites More sharing options...
Members Mood Bender Posted December 22, 2006 Members Share Posted December 22, 2006 really, really sorry to hear this. uber mojo sent... Link to comment Share on other sites More sharing options...
Members rememberduane Posted December 22, 2006 Author Members Share Posted December 22, 2006 Thanks guys... it's just going to suck now knowing on Christmas now. My dad just got my new scrip of prednisone, so hopefully that will let me function on xmas so I can spend time with my family, play with my niece and nephews and all. Link to comment Share on other sites More sharing options...
Members SkidMarx Posted December 22, 2006 Members Share Posted December 22, 2006 Originally posted by rememberduane Well I'll save the long spiel because most of you know what's been up, but let's pick up from where I left off.After flying home from Edinburgh I went straight to the hospital. They determined my sed rate was insanely high and thought I had something like lupus or rheumatoid arthritis. So they gave me a big shot of steroids and sent in the blood work to test, and gave me short-term prednisone to control the inflammation. My tests came back negative and they figured it was some crazy virus, and that I would be fine when I came off the prednisone. Well, as I started coming off the prednisone, the pain started coming back, so I went to my regular doctor. He checked it all out and said basically I have a textbook case of a condition called polymyositis.Polymyositis is a chronic, degenerative autoimmune disorder in which your white blood cells attack your muscles bilaterally, usually the ones close to the trunk (thighs and shoulders). There's no cure but they can stave it off with long-term high-dose steroids. It eventually does catch up and after years, you typically die from muscle weakness or inflammation in your heart, lungs, or esophagus -- after years of debilitation, because it replaces your muscle tissue with useless scar tissue. It also commonly presents with cancer.So this is what I'm most likely facing. The doctor said he is 90% sure. I get my blood results back Tuesday -- the reason it didn't show in the ANA test before is because it's a different type of autoimmune disorder, and shows up on a creatine kinase test rather than an ANA test. If that test comes back positive, they'll have to do a muscle biopsy to be 100%, but it's basically sure. He is also testing for blood levels that might indicate a malignancy.So I guess this is where I ask for mojo and stuff. I don't even know what to think. There's a part of me that wants it to be this, because this at least gives me years of function, and there are so many worse things it could be. If this comes back negative, we just have to keep searching to figure out what is destroying my muscles and causing me so much pain. I feel like I have a gunshot wound in my left shoulder today, the pain has gotten so bad again the doctor is calling in another short term prescription of prednisone. I'll have to see a rheumatologist soon, but nobody can get me in.It's all kind of a shock.. I'm not even sure what to think. I guess I thought I should keep you guys informed.. HC is a bit like a family. I just hope the steroids will keep me playing guitar for years, because I don't know what I'd do without it.Thanks guys,ChrisEDIT: UPDATEThank you for the responses and prayers and mojo guys.I just got my blood results back from the doctor early.It's NOT polymyositis. My creatine kinase levels came back normal. My metabolics were all normal except my liver, which was like twice what it should be. My white count is slightly elevated, but my sed rate is still insanely high. They also didn't test as thoroughly for a malignancy as I thought they did -- just metabolics.Now we have no idea what is wrong with me, and I can't get in to see a rheumatologist for I don't know how long. The doctor didn't explain what was going on with my liver. I have no idea whats going on and this is worse.I just feel helpless right now.I have an appointment to see the doctor again Thursday, and I will be demanding him to just test for anything and everything it could possibly be. I don't care what it takes, I just want to know. well, the best thing to do is try not to panic. Easy for me to say, I know. But you've already had one false alarm. Best thing to do is try to relax and wait until you have a positive diagnosis before you get yourself all worked up. Could be nuttin' and even if it's somethin' they are all over it. Good luck - Skid Link to comment Share on other sites More sharing options...
Members mr maple Posted December 22, 2006 Members Share Posted December 22, 2006 I know things will work out, prayers and love to you. Link to comment Share on other sites More sharing options...
Members SkidMarx Posted December 22, 2006 Members Share Posted December 22, 2006 Originally posted by rememberduane I'm from here, I'm going to school in Edinburgh. Thanks. As in Scotland? You haven't had any haggas lately, have ya? That stoof'll kill ya, 'twill. Link to comment Share on other sites More sharing options...
Members SkidMarx Posted December 22, 2006 Members Share Posted December 22, 2006 Originally posted by mr maple I know things will work out, prayers and love to you. "love to you"? What er you, ghey?LOL!, just kiddin' Just ryin' to lighten the momnet for ol' duane. Link to comment Share on other sites More sharing options...
Members Loghead Posted December 22, 2006 Members Share Posted December 22, 2006 Originally posted by SkidMarx As in Scotland? You haven't had any haggas lately, have ya? That stoof'll kill ya, 'twill. Nah. Haggis is good for all that ails one. Link to comment Share on other sites More sharing options...
Members STEEL KAGE Posted December 22, 2006 Members Share Posted December 22, 2006 Originally posted by Loghead Nah. Haggis is good for all that ails one. Hell yeah, thats stuff will put hair on yur ass!!! Chris, glad to hear that the test came back negative but one can live a decent life with Polymyostitis. Youre usually put on steroidals and death is very very rare.... Do yourself a favor and dont worry UNTIL youre given a reason to. Even then, get ALL the facts before you drive yourself bonkers, that wont do you any good... Peace and God Bless Bro!!! Kage Link to comment Share on other sites More sharing options...
Members SkidMarx Posted December 22, 2006 Members Share Posted December 22, 2006 Originally posted by Loghead Nah. Haggis is good for all that ails one. why is it all i can think of is "here, have mine!"? Link to comment Share on other sites More sharing options...
Members Loghead Posted December 22, 2006 Members Share Posted December 22, 2006 Originally posted by SkidMarx why is it all i can think of is "here, have mine!"? I'm astounded. Is this the first thing you've ever given away? Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.