Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 Ah, the million dollar question I don't have an answer for!!! LOL I am sincerely hoping when we get back to Mayo in February I get some further clarification of whats happened with me (supposed to see someone there for myself on our return). As you know Arlene, my inital dx was Psoriatic Arthritis and the rheumy was SO sure that was atleast part of the problem for me, but knew there was more. Then within a week I had the Dermatomyositis dx and at some point later another rheumy suspected the skin issues I had were not actually psoriasis, but mechanics hands, something more commonly seen with the DM. Then there is the arthritic symptoms that essentially went away when I started the Prednisone and have not returned, so I just don't know. The symptoms were certainly classic for arthritis, so who knows. Now of course, 3 years later, Dr. Whiteman looked over my labs, muscle bx report, etc and unlike Dr. Cohen who was "non-commital" as to whether this was mito related or not, Dr. W said he has no doubt it is and that actually mine and Madison's muscle bx report was "not that different from each other". My labs pointed him in the mito direction also, as well as my response to Prednisone, which was negative and I got worse on it. He said because its a mito toxin, its not a surprise to him, and I can "never be on it again" (Thank God). SO.....where we stand now I don't have a clue!! LOL Not doubting this is my mito presentation, though what my presentation is anymore is unclear to me atleast (i.e. what we name whats going on with me). Maybe things will be clearer after we get back to Mayo in February. Promise to share if they are!!! Till then, take care of yourself friend!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(6-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown "A. C." wrote: My son is Mito...........probably a lipid storage one, he has too many lipids in his muscles. I am 44. I have psoriasis. I have diabetes. I have been experiencing continuous pain and burning in my arm....shoulder to elbow since september. I can't rotate my arm, prop myself on it etc. My mom and sister had arthritis/brisitis.I have an appointment at a Rheumotologist Dec. 10. Some people with psoriasis get a particular kind of arthritis. But now I am wondering........................is this arthritis truly, and is it related to Mito??any thoughts.......................................Kass/??????????????? Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 Ah, the million dollar question I don't have an answer for!!! LOL I am sincerely hoping when we get back to Mayo in February I get some further clarification of whats happened with me (supposed to see someone there for myself on our return). As you know Arlene, my inital dx was Psoriatic Arthritis and the rheumy was SO sure that was atleast part of the problem for me, but knew there was more. Then within a week I had the Dermatomyositis dx and at some point later another rheumy suspected the skin issues I had were not actually psoriasis, but mechanics hands, something more commonly seen with the DM. Then there is the arthritic symptoms that essentially went away when I started the Prednisone and have not returned, so I just don't know. The symptoms were certainly classic for arthritis, so who knows. Now of course, 3 years later, Dr. Whiteman looked over my labs, muscle bx report, etc and unlike Dr. Cohen who was "non-commital" as to whether this was mito related or not, Dr. W said he has no doubt it is and that actually mine and Madison's muscle bx report was "not that different from each other". My labs pointed him in the mito direction also, as well as my response to Prednisone, which was negative and I got worse on it. He said because its a mito toxin, its not a surprise to him, and I can "never be on it again" (Thank God). SO.....where we stand now I don't have a clue!! LOL Not doubting this is my mito presentation, though what my presentation is anymore is unclear to me atleast (i.e. what we name whats going on with me). Maybe things will be clearer after we get back to Mayo in February. Promise to share if they are!!! Till then, take care of yourself friend!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(6-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown "A. C." wrote: My son is Mito...........probably a lipid storage one, he has too many lipids in his muscles. I am 44. I have psoriasis. I have diabetes. I have been experiencing continuous pain and burning in my arm....shoulder to elbow since september. I can't rotate my arm, prop myself on it etc. My mom and sister had arthritis/brisitis.I have an appointment at a Rheumotologist Dec. 10. Some people with psoriasis get a particular kind of arthritis. But now I am wondering........................is this arthritis truly, and is it related to Mito??any thoughts.......................................Kass/??????????????? Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 I was diagnosed many years ago with arthritis also and have suffered symptoms like it since I was a kid. I used to complain of leg pain as a kid all the time and cried myself to sleep often. Then as I became older I started having major pain in the arms and hands as well. I tried have everything (non-meds) to stop the pain but nothing worked. Often the pain occurred when I had muscle weakness and I know that is a big part of the pain. The muscle becomes weak and then everything is extra hard to do and the muscles get so tired and then aches terribly. Dr. Whiteman, like with you, assume I have Mito and it explains much of the past years and it is nice to finally have a doctor take me seriously. Did you know that Prednisolone is the steroid Asenath is using? I didn't know it was a mito toxin. HMMM Darla: mommy to Asenath Re: mito and arthritis?? Ah, the million dollar question I don't have an answer for!!! LOL I am sincerely hoping when we get back to Mayo in February I get some further clarification of whats happened with me (supposed to see someone there for myself on our return). As you know Arlene, my inital dx was Psoriatic Arthritis and the rheumy was SO sure that was atleast part of the problem for me, but knew there was more. Then within a week I had the Dermatomyositis dx and at some point later another rheumy suspected the skin issues I had were not actually psoriasis, but mechanics hands, something more commonly seen with the DM. Then there is the arthritic symptoms that essentially went away when I started the Prednisone and have not returned, so I just don't know. The symptoms were certainly classic for arthritis, so who knows. Now of course, 3 years later, Dr. Whiteman looked over my labs, muscle bx report, etc and unlike Dr. Cohen who was "non-commital" as to whether this was mito related or not, Dr. W said he has no doubt it is and that actually mine and Madison's muscle bx report was "not that different from each other". My labs pointed him in the mito direction also, as well as my response to Prednisone, which was negative and I got worse on it. He said because its a mito toxin, its not a surprise to him, and I can "never be on it again" (Thank God). SO.....where we stand now I don't have a clue!! LOL Not doubting this is my mito presentation, though what my presentation is anymore is unclear to me atleast (i.e. what we name whats going on with me). Maybe things will be clearer after we get back to Mayo in February. Promise to share if they are!!! Till then, take care of yourself friend!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(6-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown "A. C." wrote: My son is Mito...........probably a lipid storage one, he has too many lipids in his muscles. I am 44. I have psoriasis. I have diabetes. I have been experiencing continuous pain and burning in my arm....shoulder to elbow since september. I can't rotate my arm, prop myself on it etc. My mom and sister had arthritis/brisitis.I have an appointment at a Rheumotologist Dec. 10. Some people with psoriasis get a particular kind of arthritis. But now I am wondering........................is this arthritis truly, and is it related to Mito??any thoughts.......................................Kass/??????????????? ArlenePlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 Hi Hun :-) It DID occur to me a time or two that Aseneth was on steroids and I wondered about it, though I suspected it was the lesser of two evils in her case unfortunatly. I remember hearing Pred was a mito toxin back when I was on it and so much worse while on it, but at the time there didn't appear to be another option so I assumed it was just something I'd have to endure. Dr. Whiteman though felt that particularly since I had such a negative reaction to it, going back on it was no longer an option for me and even said that if I had to take it another time or two the muscle loss would be such I'd likely be in a wheelchair from then on. What exactly we'll do if I get sick again I have no idea, however Dr. W seemed to feel like the doc he wants me to see there would be able to manage things without it. DH and I had honestly already decided I'd refuse Pred as treatment in the future anyway, so this just bolstered the decision we'd already made. Sigh...the decisions that have to be made sometimes!! Something that may or may not be of interest that we learned from Dr. W while at Mayo is that in all three kids, whats been previously seen as hypermobility, or loose joints, is actually more of a muscle issue than a connective tissue one in their case. It seems like this might relate to what your saying in that if the muscles are not working right the strain on the joints would be greater and might be the cause of arthritic type pain. He went on to say that determining whether hypermobility is a muscle or connective tissue issue is tough and often the blame is put on the wrong thing. Oh.....I too had lots of leg pain as a kid and often cried myself to sleep. Course back then they always said it was "growing pains", though that lost some credibility when I was still having them after I quit growing!! Sure wish Dr. W didn't think mito was the cause of either of our issues, but am glad he is taking your stuff seriously. -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(6-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown Darla Klein wrote: I was diagnosed many years ago with arthritis also and have suffered symptoms like it since I was a kid. I used to complain of leg pain as a kid all the time and cried myself to sleep often. Then as I became older I started having major pain in the arms and hands as well. I tried have everything (non-meds) to stop the pain but nothing worked. Often the pain occurred when I had muscle weakness and I know that is a big part of the pain. The muscle becomes weak and then everything is extra hard to do and the muscles get so tired and then aches terribly. Dr. Whiteman, like with you, assume I have Mito and it explains much of the past years and it is nice to finally have a doctor take me seriously. Did you know that Prednisolone is the steroid Asenath is using? I didn't know it was a mito toxin. HMMM Darla: mommy to Asenath! Re: mito and arthritis?? Ah, the million dollar question I don't have an answer for!!! LOL I am sincerely hoping when we get back to Mayo in February I get some further clarification of whats happened with me (supposed to see someone there for myself on our return). As you know Arlene, my inital dx was Psoriatic Arthritis and the rheumy was SO sure that was atleast part of the problem for me, but knew there was more. The! n within a week I had the Dermatomyositis dx and at some point later a nother rheumy suspected the skin issues I had were not actually psoriasis, but mechanics hands, something more commonly seen with the DM. Then there is the arthritic symptoms that essentially went away when I started the Prednisone and have not returned, so I just don't know. The symptoms were certainly classic for arthritis, so who knows. Now of course, 3 years later, Dr. Whiteman looked over my labs, muscle bx report, etc and unlike Dr. Cohen who was "non-commital" as to whether this was mito related or not, Dr. W said he has no doubt it is and that actually mine and Madison's muscle bx report was "not that different from each other". My labs pointed him in the mito direction also, as well as my response to Prednisone, which was negative and I got worse on it. He said because its a mito toxin, its not a surprise to him, and I can "never be on it again" (Thank God). SO.....where we stand now I don't have a clue!! LOL Not doubting ! this is my mito presentation, though what my presentation is anymore is unclear to me atleast (i.e. what we name whats going on with me). Maybe things will be clearer after we get back to Mayo in February. Promise to share if they are!!! Till then, take care of yourself friend!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(6-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 Hi Hun :-) It DID occur to me a time or two that Aseneth was on steroids and I wondered about it, though I suspected it was the lesser of two evils in her case unfortunatly. I remember hearing Pred was a mito toxin back when I was on it and so much worse while on it, but at the time there didn't appear to be another option so I assumed it was just something I'd have to endure. Dr. Whiteman though felt that particularly since I had such a negative reaction to it, going back on it was no longer an option for me and even said that if I had to take it another time or two the muscle loss would be such I'd likely be in a wheelchair from then on. What exactly we'll do if I get sick again I have no idea, however Dr. W seemed to feel like the doc he wants me to see there would be able to manage things without it. DH and I had honestly already decided I'd refuse Pred as treatment in the future anyway, so this just bolstered the decision we'd already made. Sigh...the decisions that have to be made sometimes!! Something that may or may not be of interest that we learned from Dr. W while at Mayo is that in all three kids, whats been previously seen as hypermobility, or loose joints, is actually more of a muscle issue than a connective tissue one in their case. It seems like this might relate to what your saying in that if the muscles are not working right the strain on the joints would be greater and might be the cause of arthritic type pain. He went on to say that determining whether hypermobility is a muscle or connective tissue issue is tough and often the blame is put on the wrong thing. Oh.....I too had lots of leg pain as a kid and often cried myself to sleep. Course back then they always said it was "growing pains", though that lost some credibility when I was still having them after I quit growing!! Sure wish Dr. W didn't think mito was the cause of either of our issues, but am glad he is taking your stuff seriously. -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(6-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown Darla Klein wrote: I was diagnosed many years ago with arthritis also and have suffered symptoms like it since I was a kid. I used to complain of leg pain as a kid all the time and cried myself to sleep often. Then as I became older I started having major pain in the arms and hands as well. I tried have everything (non-meds) to stop the pain but nothing worked. Often the pain occurred when I had muscle weakness and I know that is a big part of the pain. The muscle becomes weak and then everything is extra hard to do and the muscles get so tired and then aches terribly. Dr. Whiteman, like with you, assume I have Mito and it explains much of the past years and it is nice to finally have a doctor take me seriously. Did you know that Prednisolone is the steroid Asenath is using? I didn't know it was a mito toxin. HMMM Darla: mommy to Asenath! Re: mito and arthritis?? Ah, the million dollar question I don't have an answer for!!! LOL I am sincerely hoping when we get back to Mayo in February I get some further clarification of whats happened with me (supposed to see someone there for myself on our return). As you know Arlene, my inital dx was Psoriatic Arthritis and the rheumy was SO sure that was atleast part of the problem for me, but knew there was more. The! n within a week I had the Dermatomyositis dx and at some point later a nother rheumy suspected the skin issues I had were not actually psoriasis, but mechanics hands, something more commonly seen with the DM. Then there is the arthritic symptoms that essentially went away when I started the Prednisone and have not returned, so I just don't know. The symptoms were certainly classic for arthritis, so who knows. Now of course, 3 years later, Dr. Whiteman looked over my labs, muscle bx report, etc and unlike Dr. Cohen who was "non-commital" as to whether this was mito related or not, Dr. W said he has no doubt it is and that actually mine and Madison's muscle bx report was "not that different from each other". My labs pointed him in the mito direction also, as well as my response to Prednisone, which was negative and I got worse on it. He said because its a mito toxin, its not a surprise to him, and I can "never be on it again" (Thank God). SO.....where we stand now I don't have a clue!! LOL Not doubting ! this is my mito presentation, though what my presentation is anymore is unclear to me atleast (i.e. what we name whats going on with me). Maybe things will be clearer after we get back to Mayo in February. Promise to share if they are!!! Till then, take care of yourself friend!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(6-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 Hi Hun :-) It DID occur to me a time or two that Aseneth was on steroids and I wondered about it, though I suspected it was the lesser of two evils in her case unfortunatly. I remember hearing Pred was a mito toxin back when I was on it and so much worse while on it, but at the time there didn't appear to be another option so I assumed it was just something I'd have to endure. Dr. Whiteman though felt that particularly since I had such a negative reaction to it, going back on it was no longer an option for me and even said that if I had to take it another time or two the muscle loss would be such I'd likely be in a wheelchair from then on. What exactly we'll do if I get sick again I have no idea, however Dr. W seemed to feel like the doc he wants me to see there would be able to manage things without it. DH and I had honestly already decided I'd refuse Pred as treatment in the future anyway, so this just bolstered the decision we'd already made. Sigh...the decisions that have to be made sometimes!! Something that may or may not be of interest that we learned from Dr. W while at Mayo is that in all three kids, whats been previously seen as hypermobility, or loose joints, is actually more of a muscle issue than a connective tissue one in their case. It seems like this might relate to what your saying in that if the muscles are not working right the strain on the joints would be greater and might be the cause of arthritic type pain. He went on to say that determining whether hypermobility is a muscle or connective tissue issue is tough and often the blame is put on the wrong thing. Oh.....I too had lots of leg pain as a kid and often cried myself to sleep. Course back then they always said it was "growing pains", though that lost some credibility when I was still having them after I quit growing!! Sure wish Dr. W didn't think mito was the cause of either of our issues, but am glad he is taking your stuff seriously. -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(6-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown Darla Klein wrote: I was diagnosed many years ago with arthritis also and have suffered symptoms like it since I was a kid. I used to complain of leg pain as a kid all the time and cried myself to sleep often. Then as I became older I started having major pain in the arms and hands as well. I tried have everything (non-meds) to stop the pain but nothing worked. Often the pain occurred when I had muscle weakness and I know that is a big part of the pain. The muscle becomes weak and then everything is extra hard to do and the muscles get so tired and then aches terribly. Dr. Whiteman, like with you, assume I have Mito and it explains much of the past years and it is nice to finally have a doctor take me seriously. Did you know that Prednisolone is the steroid Asenath is using? I didn't know it was a mito toxin. HMMM Darla: mommy to Asenath! Re: mito and arthritis?? Ah, the million dollar question I don't have an answer for!!! LOL I am sincerely hoping when we get back to Mayo in February I get some further clarification of whats happened with me (supposed to see someone there for myself on our return). As you know Arlene, my inital dx was Psoriatic Arthritis and the rheumy was SO sure that was atleast part of the problem for me, but knew there was more. The! n within a week I had the Dermatomyositis dx and at some point later a nother rheumy suspected the skin issues I had were not actually psoriasis, but mechanics hands, something more commonly seen with the DM. Then there is the arthritic symptoms that essentially went away when I started the Prednisone and have not returned, so I just don't know. The symptoms were certainly classic for arthritis, so who knows. Now of course, 3 years later, Dr. Whiteman looked over my labs, muscle bx report, etc and unlike Dr. Cohen who was "non-commital" as to whether this was mito related or not, Dr. W said he has no doubt it is and that actually mine and Madison's muscle bx report was "not that different from each other". My labs pointed him in the mito direction also, as well as my response to Prednisone, which was negative and I got worse on it. He said because its a mito toxin, its not a surprise to him, and I can "never be on it again" (Thank God). SO.....where we stand now I don't have a clue!! LOL Not doubting ! this is my mito presentation, though what my presentation is anymore is unclear to me atleast (i.e. what we name whats going on with me). Maybe things will be clearer after we get back to Mayo in February. Promise to share if they are!!! Till then, take care of yourself friend!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(6-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown Quote Link to comment Share on other sites More sharing options...
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