Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 HI Mike , So sorry to hear that life is dealing ya some crap cards right now. Im sorry I cant offer you answers as far as a DX , but just know your in my thoughts and prayers. Tonya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Hi Mike, You have every right to be scared. I went through all of this a few years back and then again with all 4 of my kids. We all eventually got a diagnosis from Dr. Cohen in 1999. I know how tough this is especially when you're sick. I'm sorry your wife isn't handling this. Do you have any other support in your life...friends or your own family? I sure hope you do. Pyruvate levels are something typically checked when trying to get the Mito. diagnosis. They will look at the fact that it's abnormal. They'll also look at the myopathy as a sign as well. Did you have this blood work done at CCF or somewhere else? Because if it was somewhere else they will want to have it done there too probably. I know when I went I had it done there. I'm not sure what non-necrotizing myopathy is, but I think (don't quote me on this) it's a good think. I think necrotizing is when something dies like cells or things like that.... but again I am hoping someone else will know for sure. Please keep us posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Hi Mike, I'm so sorry to read that your life is in such turmoil. Sickness itself is enough but when a marriage is in jeopardy, that's a horrible emotional blow. Can you seek counseling to try to put the marriage back together. I'm no good at analizing test results so I'll leave that up to those more expert at that, but I want you to know that we do care and hope things quickly improve. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Mike, I can't tell you any particular test result analysis, but I would say that it would warrant further investigation. On the home front, I know how difficult that can be. My hubby refuses to learn about mito and both our 13 year old daughter daughter and I are affected. He works long hours and tries to pretend like we are faking it. Illness in general scares a lot of people, but mito being so very complicated and unpredictable makes it even more so, for ALL of us. Please get your wife into counseling if you can. My husband refuses to go, but I am taking our daughter to help her deal with his rejection. Hugs, lord_mike_the_great wrote: >Hello, > >You may remember me from such posts as " Hello, " and " Hello again... " >I'm seeing Dr. shields at CCF for the possibility of a mito DX. I got >back my blood work, and everything is OK, except for my resting >pyruvate is double normal (0.16, normal limit is 0.08, lactate is >OK). What does this mean? > >My EMG looked pretty bad, too. It said that the test showed that I >had generalized non-necrotizing myopathy of the proximal muscles, >especially in my gluteus maximus. What does this mean (besides that >I have a flabby butt)? I looked up myopathy, and there are about 100 >different causes, and none of them mention necrotizing or whatever. > >I'm scared. My wife is leaving me, too. She's sick of me being sick >(nice!) So, everything is going to hell in a handbasket. > >If anyone can offer some insight, I'd be very appreciative! I don't >know when Dr. Shiels will be caling me back. I'm sure that I will >have a biopsy soon. > >Thanks, > >Mike > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Scared... Hello,You may remember me from such posts as "Hello," and "Hello again..." I'm seeing Dr. shields at CCF for the possiblity of a mito DX. I got back my blood work, and everything is OK, except for my resting pyruvate is double normal (0.16, normal limit is 0.08, lactate is OK). What does this mean?My EMG looked pretty bad, too. It said that the test showed that I had generalized non-necrotizing myopathy of the proximal muscles, especially in my gluteus maximus. What does this mean (besides that I have a flabby butt)? I looked up myopathy, and there are about 100 different causes, and none of them mention necrotizing or whatever.I'm scared. My wife is leaving me, too. She's sick of me being sick (nice!) So, everything is going to hell in a handbasket.If anyone can offer some insight, I'd be very appreciative! I don't know when Dr. Shiels will be caling me back. I'm sure that I will have a biopsy soon.Thanks,MikeMedical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 HUGS sorry your life just became hell in a handbasket . I cant give you definite definitions but I do know all that stuff sounds familiar as I have read about them on the lists, so I will let others tell you what they mean. HUGS Hello,You may remember me from such posts as "Hello," and "Hello again..." I'm seeing Dr. shields at CCF for the possiblity of a mito DX. I got back my blood work, and everything is OK, except for my resting pyruvate is double normal (0.16, normal limit is 0.08, lactate is OK). What does this mean?My EMG looked pretty bad, too. It said that the test showed that I had generalized non-necrotizing myopathy of the proximal muscles, especially in my gluteus maximus. What does this mean (besides that I have a flabby butt)? I looked up myopathy, and there are about 100 different causes, and none of them mention necrotizing or whatever.I'm scared. My wife is leaving me, too. She's sick of me being sick (nice!) So, everything is going to hell in a handbasket.If anyone can offer some insight, I'd be very appreciative! I don't know when Dr. Shiels will be caling me back. I'm sure that I will have a biopsy soon.Thanks,Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Mike, Sorry to hear about your problems with your wife. It can be very hard on significant others and some can deal with it some cant. What you have to do is worry about you. Its good that you have your parents that are supportive (i live with my parents and mine are really great, especially my mom). I'm engaged to be married but its been an off and on type of thing- he has a tough time dealing with me being sick all the time and we dont live together of course and he doesnt see how my drs appts are, etc. I dont know if we will ever get married actually. but anyways, went off on that sorry. I just know i and alot of people on here understand what you are going through. I definitely suggest you seek counselling, maybe with someone that specializes in seeing people with chronic health issues. I was able to find someone and they helped alot. Maybe you can also find a support group for mito or MD fairly close to you also. I know this group here is so very helpful itself. As for your appt with dr. shields, did you like him? I see him in july next yr, I havent had a clear diagnosis of mito yet but they are sure its what i have. I had the opposite of you, my pyruvate was fine but lactate was high. Dr that did it didnt really explain it and there is also the ratio of the two and i asked him about that and he had no clue what i was talking about. I've had one abnormal EMG that showed the same, non-specific myopathy. BUt ive had others that were fine. Hopefully dr shields will definitely do more for you, i know its a long process unfortunately. Anyways, please keep us posted. you are in my thoughts. take care, adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Dear Mike: I am so sorry that things are tough for you right now..particularly with your wife leaving you. Having gone through a divorce myself, I know how stressful that can be. Keep us posted..... Carol Scared... Hello,You may remember me from such posts as "Hello," and "Hello again..." I'm seeing Dr. shields at CCF for the possiblity of a mito DX. I got back my blood work, and everything is OK, except for my resting pyruvate is double normal (0.16, normal limit is 0.08, lactate is OK). What does this mean?My EMG looked pretty bad, too. It said that the test showed that I had generalized non-necrotizing myopathy of the proximal muscles, especially in my gluteus maximus. What does this mean (besides that I have a flabby butt)? I looked up myopathy, and there are about 100 different causes, and none of them mention necrotizing or whatever.I'm scared. My wife is leaving me, too. She's sick of me being sick (nice!) So, everything is going to hell in a handbasket.If anyone can offer some insight, I'd be very appreciative! I don't know when Dr. Shiels will be caling me back. I'm sure that I will have a biopsy soon.Thanks,MikeMedical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Mike, I am not good at reading reports, but I do want to let you know that you are not alone. We care and if you need to vent, the list is always here. a Hello,You may remember me from such posts as "Hello," and "Hello again..." I'm seeing Dr. shields at CCF for the possiblity of a mito DX. I got back my blood work, and everything is OK, except for my resting pyruvate is double normal (0.16, normal limit is 0.08, lactate is OK). What does this mean? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Thank you for your reply. I thought proximal meant close to the body, like thighs and arms. The EMG explains why I have difficulty getting out of my parents' Honda Civic (it is so low to the ground). May I ask, what type of mito you have? Is it one of the " benign " ones? do you suffer from dysautonomia? What do you use to treat it? Thanks, Mike > Mike > > I'm sorry you are having such problems. Life isn't always fair and it seems > to be less fair for those with mito. > > It is my understanding that the ratio of lactate to pyruvate is more > important than the actual values (unless lactate is really high). My lactate > was normal and pyruvate high which meant that my ratio was in the range > indicative of mito. > > An EMG can diagnose myopathy, but not what kind. The fact that it is the > proximal (away from the body) muscles that are most affected, makes me think > mito, but we are all different. I have had around 20 EMGs, but never one in > my butt. That is an area that is very painful when I stand. > > I hope you start getting some answers. It took me 15 years to get a > diagnosis and I think the stress of knowing something was wrong and having > doctors tell me that I was fine or that it was in my head, actually caused > progression. > > laurie > > From: " Ayars " <gayars@s...> > Reply-To: @y... > Date: Sat, 23 Nov 2002 08:20:48 -0600 > To: < @y...> > Subject: Re: Scared... > > > > Scared... > > Hello, > > You may remember me from such posts as " Hello, " and " Hello again... " > I'm seeing Dr. shields at CCF for the possiblity of a mito DX. I got > back my blood work, and everything is OK, except for my resting > pyruvate is double normal (0.16, normal limit is 0.08, lactate is > OK). What does this mean? > > My EMG looked pretty bad, too. It said that the test showed that I > had generalized non-necrotizing myopathy of the proximal muscles, > especially in my gluteus maximus. What does this mean (besides that > I have a flabby butt)? I looked up myopathy, and there are about 100 > different causes, and none of them mention necrotizing or whatever. > > I'm scared. My wife is leaving me, too. She's sick of me being sick > (nice!) So, everything is going to hell in a handbasket. > > If anyone can offer some insight, I'd be very appreciative! I don't > know when Dr. Shiels will be caling me back. I'm sure that I will > have a biopsy soon. > > Thanks, > > Mike > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Thank you, , for your kind post. Fortunatley, my family is very supportive. I read that inflammatory myopathy can be non- necrotizing, but my sed rate is low. May I ask, what type of mito you have, and how you are treating it? Thanks, Mike > Hi Mike, > > You have every right to be scared. I went through all of this a few years > back and then again with all 4 of my kids. We all eventually got a diagnosis > from Dr. Cohen in 1999. > > I know how tough this is especially when you're sick. I'm sorry your wife > isn't handling this. Do you have any other support in your life...friends or > your own family? I sure hope you do. > > Pyruvate levels are something typically checked when trying to get the Mito. > diagnosis. They will look at the fact that it's abnormal. They'll also look > at the myopathy as a sign as well. Did you have this blood work done at CCF > or somewhere else? Because if it was somewhere else they will want to have > it done there too probably. I know when I went I had it done there. > > I'm not sure what non-necrotizing myopathy is, but I think (don't quote me on > this) it's a good think. I think necrotizing is when something dies like > cells or things like that.... but again I am hoping someone else will know > for sure. > > Please keep us posted. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Alice, thank you for your kind reply. My fwife won't go to counseling. She is done with me. She had a friend whose husband died of MELAS. If it turns out I have mito, there is absolutely no way whe will want to be with me. Thanks, Mike > Hi Mike, > > I'm so sorry to read that your life is in such > turmoil. Sickness itself is enough but when a > marriage is in jeopardy, that's a horrible emotional > blow. Can you seek counseling to try to put the > marriage back together. > > I'm no good at analizing test results so I'll leave > that up to those more expert at that, but I want you > to know that we do care and hope things quickly > improve. > > Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Adrienne, Thank you for your reply. Dr. Shields is very nice and attentive. He is a great guy, very knowledgeable and compassionate. My lactate/pyruvate ratios go whacky after exertion, but are generally fine at rest, except for this latest abnormality. Thanks, Mike -- In @y..., moonchild62579@a... wrote: > Mike, > Sorry to hear about your problems with your wife. It can be very hard on > significant others and some can deal with it some cant. What you have to do > is worry about you. Its good that you have your parents that are supportive > (i live with my parents and mine are really great, especially my mom). I'm > engaged to be married but its been an off and on type of thing- he has a > tough time dealing with me being sick all the time and we dont live together > of course and he doesnt see how my drs appts are, etc. I dont know if we will > ever get married actually. but anyways, went off on that sorry. I just know i > and alot of people on here understand what you are going through. I > definitely suggest you seek counselling, maybe with someone that specializes > in seeing people with chronic health issues. I was able to find someone and > they helped alot. Maybe you can also find a support group for mito or MD > fairly close to you also. I know this group here is so very helpful itself. > As for your appt with dr. shields, did you like him? I see him in july > next yr, I havent had a clear diagnosis of mito yet but they are sure its > what i have. I had the opposite of you, my pyruvate was fine but lactate was > high. Dr that did it didnt really explain it and there is also the ratio of > the two and i asked him about that and he had no clue what i was talking > about. I've had one abnormal EMG that showed the same, non-specific myopathy. > BUt ive had others that were fine. Hopefully dr shields will definitely do > more for you, i know its a long process unfortunately. Anyways, please keep > us posted. you are in my thoughts. > take care, > adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 , I ma very sorry about your situation, as you can expect, I empathise greatly. It really stinks to be in this position, and especially for your daughter. It sounds like your husband needs to find a way to deal with these issues instead of hiding from them. Thanks, Mike > > >Hello, > > > >You may remember me from such posts as " Hello, " and " Hello again... " > >I'm seeing Dr. shields at CCF for the possibility of a mito DX. I got > >back my blood work, and everything is OK, except for my resting > >pyruvate is double normal (0.16, normal limit is 0.08, lactate is > >OK). What does this mean? > > > >My EMG looked pretty bad, too. It said that the test showed that I > >had generalized non-necrotizing myopathy of the proximal muscles, > >especially in my gluteus maximus. What does this mean (besides that > >I have a flabby butt)? I looked up myopathy, and there are about 100 > >different causes, and none of them mention necrotizing or whatever. > > > >I'm scared. My wife is leaving me, too. She's sick of me being sick > >(nice!) So, everything is going to hell in a handbasket. > > > >If anyone can offer some insight, I'd be very appreciative! I don't > >know when Dr. Shiels will be caling me back. I'm sure that I will > >have a biopsy soon. > > > >Thanks, > > > >Mike > > > > > > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 You guys are really making me count my blessings. I waited 49 years for him, but have a very supportive husband. I wish all of you could have supportive spouses. It makes such a difference in coping with this disease. I don't understand the kind of love that turns its back when the going gets tough but did experience it from my parents and siblings who only love in fair weather. Ruth Re: Scared... , I ma very sorry about your situation, as you can expect, I empathise greatly. It really stinks to be in this position, and especially for your daughter. It sounds like your husband needs to find a way to deal with these issues instead of hiding from them. Thanks, Mike > > >Hello, > > > >You may remember me from such posts as " Hello, " and " Hello again... " > >I'm seeing Dr. shields at CCF for the possibility of a mito DX. I got > >back my blood work, and everything is OK, except for my resting > >pyruvate is double normal (0.16, normal limit is 0.08, lactate is > >OK). What does this mean? > > > >My EMG looked pretty bad, too. It said that the test showed that I > >had generalized non-necrotizing myopathy of the proximal muscles, > >especially in my gluteus maximus. What does this mean (besides that > >I have a flabby butt)? I looked up myopathy, and there are about 100 > >different causes, and none of them mention necrotizing or whatever. > > > >I'm scared. My wife is leaving me, too. She's sick of me being sick > >(nice!) So, everything is going to hell in a handbasket. > > > >If anyone can offer some insight, I'd be very appreciative! I don't > >know when Dr. Shiels will be caling me back. I'm sure that I will > >have a biopsy soon. > > > >Thanks, > > > >Mike > > > > > > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Hi Mike, Laurie and everyone, Been out of the picture for a very long time, just now getting on the computer to see what all is being said on the site. Between the computer being down and my time being consumed in other directions, I've really missed being on the mito site to be in touch. Just wanted to also thank Laurie for clearing up my confusion on proximal. I thought proximal was the muscles closest to the body and distal was like fingers and toes. Cassie's weakness has been occurring from fingers and toes and then moves on up to the body. By the way, her health is quickly deteriorating, the weakness is coming close to consuming her whole body. The weakness in her body quickly switches over to lose of function. The weakness is now showing itself in her lungs and heart. Everyday, is even more precious than before. Together in Heart, Mind and Prayer, Re: Scared... > > > > Scared... > > Hello, > > You may remember me from such posts as " Hello, " and " Hello again... " > I'm seeing Dr. shields at CCF for the possiblity of a mito DX. I got > back my blood work, and everything is OK, except for my resting > pyruvate is double normal (0.16, normal limit is 0.08, lactate is > OK). What does this mean? > > My EMG looked pretty bad, too. It said that the test showed that I > had generalized non-necrotizing myopathy of the proximal muscles, > especially in my gluteus maximus. What does this mean (besides that > I have a flabby butt)? I looked up myopathy, and there are about 100 > different causes, and none of them mention necrotizing or whatever. > > I'm scared. My wife is leaving me, too. She's sick of me being sick > (nice!) So, everything is going to hell in a handbasket. > > If anyone can offer some insight, I'd be very appreciative! I don't > know when Dr. Shiels will be caling me back. I'm sure that I will > have a biopsy soon. > > Thanks, > > Mike > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Mike Proximal does mean close to the body - sorry for the confusion. I do best getting out of minivans and higher chairs. I have a complex I,II, and III defect. I do have dysautonomia. I use many supplements suggested by my doctors. I take a large amount of CoQ10 (Q Gel), Carnitor, Vit C, Vit E, B complex, Multivitamin, B2, Folic acid, alpha lopoic acid, and garlic. I also take Lamictal for myoclonus and calcium, magnesium, potassium and vit. D for deficiencies caused by my kidneys not working properly. laurie Reply-To: Date: Sat, 23 Nov 2002 21:29:47 -0000 To: Subject: Re: Scared... Thank you for your reply. I thought proximal meant close to the body, like thighs and arms. The EMG explains why I have difficulty getting out of my parents' Honda Civic (it is so low to the ground). May I ask, what type of mito you have? Is it one of the " benign " ones? do you suffer from dysautonomia? What do you use to treat it? Thanks, Mike > Mike > > I'm sorry you are having such problems. Life isn't always fair and it seems > to be less fair for those with mito. > > It is my understanding that the ratio of lactate to pyruvate is more > important than the actual values (unless lactate is really high). My lactate > was normal and pyruvate high which meant that my ratio was in the range > indicative of mito. > > An EMG can diagnose myopathy, but not what kind. The fact that it is the > proximal (away from the body) muscles that are most affected, makes me think > mito, but we are all different. I have had around 20 EMGs, but never one in > my butt. That is an area that is very painful when I stand. > > I hope you start getting some answers. It took me 15 years to get a > diagnosis and I think the stress of knowing something was wrong and having > doctors tell me that I was fine or that it was in my head, actually caused > progression. > > laurie > > From: " Ayars " <gayars@s...> > Reply-To: @y... > Date: Sat, 23 Nov 2002 08:20:48 -0600 > To: < @y...> > Subject: Re: Scared... > > > > Scared... > > Hello, > > You may remember me from such posts as " Hello, " and " Hello again... " > I'm seeing Dr. shields at CCF for the possiblity of a mito DX. I got > back my blood work, and everything is OK, except for my resting > pyruvate is double normal (0.16, normal limit is 0.08, lactate is > OK). What does this mean? > > My EMG looked pretty bad, too. It said that the test showed that I > had generalized non-necrotizing myopathy of the proximal muscles, > especially in my gluteus maximus. What does this mean (besides that > I have a flabby butt)? I looked up myopathy, and there are about 100 > different causes, and none of them mention necrotizing or whatever. > > I'm scared. My wife is leaving me, too. She's sick of me being sick > (nice!) So, everything is going to hell in a handbasket. > > If anyone can offer some insight, I'd be very appreciative! I don't > know when Dr. Shiels will be caling me back. I'm sure that I will > have a biopsy soon. > > Thanks, > > Mike > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 I'm sorry for the confusion. You and Mike are right about Proximal. I was thinking that and typing something else - mito brain at work. I'm sorry to hear that Cassie is loosing more function. It is nice to have a post from you. laurie Reply-To: Date: Sat, 23 Nov 2002 22:47:41 -0500 To: < > Subject: Re: Scared... Hi Mike, Laurie and everyone, Been out of the picture for a very long time, just now getting on the computer to see what all is being said on the site. Between the computer being down and my time being consumed in other directions, I've really missed being on the mito site to be in touch. Just wanted to also thank Laurie for clearing up my confusion on proximal. I thought proximal was the muscles closest to the body and distal was like fingers and toes. Cassie's weakness has been occurring from fingers and toes and then moves on up to the body. By the way, her health is quickly deteriorating, the weakness is coming close to consuming her whole body. The weakness in her body quickly switches over to lose of function. The weakness is now showing itself in her lungs and heart. Everyday, is even more precious than before. Together in Heart, Mind and Prayer, Re: Scared... > > > > Scared... > > Hello, > > You may remember me from such posts as " Hello, " and " Hello again... " > I'm seeing Dr. shields at CCF for the possiblity of a mito DX. I got > back my blood work, and everything is OK, except for my resting > pyruvate is double normal (0.16, normal limit is 0.08, lactate is > OK). What does this mean? > > My EMG looked pretty bad, too. It said that the test showed that I > had generalized non-necrotizing myopathy of the proximal muscles, > especially in my gluteus maximus. What does this mean (besides that > I have a flabby butt)? I looked up myopathy, and there are about 100 > different causes, and none of them mention necrotizing or whatever. > > I'm scared. My wife is leaving me, too. She's sick of me being sick > (nice!) So, everything is going to hell in a handbasket. > > If anyone can offer some insight, I'd be very appreciative! I don't > know when Dr. Shiels will be caling me back. I'm sure that I will > have a biopsy soon. > > Thanks, > > Mike > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Ruth Having met him, you found a winner. laurie Reply-To: Date: Sat, 23 Nov 2002 21:40:13 -0500 To: < > Subject: RE: Scared... You guys are really making me count my blessings. I waited 49 years for him, but have a very supportive husband. I wish all of you could have supportive spouses. It makes such a difference in coping with this disease. I don't understand the kind of love that turns its back when the going gets tough but did experience it from my parents and siblings who only love in fair weather. Ruth Re: Scared... , I ma very sorry about your situation, as you can expect, I empathise greatly. It really stinks to be in this position, and especially for your daughter. It sounds like your husband needs to find a way to deal with these issues instead of hiding from them. Thanks, Mike > > >Hello, > > > >You may remember me from such posts as " Hello, " and " Hello again... " > >I'm seeing Dr. shields at CCF for the possibility of a mito DX. I got > >back my blood work, and everything is OK, except for my resting > >pyruvate is double normal (0.16, normal limit is 0.08, lactate is > >OK). What does this mean? > > > >My EMG looked pretty bad, too. It said that the test showed that I > >had generalized non-necrotizing myopathy of the proximal muscles, > >especially in my gluteus maximus. What does this mean (besides that > >I have a flabby butt)? I looked up myopathy, and there are about 100 > >different causes, and none of them mention necrotizing or whatever. > > > >I'm scared. My wife is leaving me, too. She's sick of me being sick > >(nice!) So, everything is going to hell in a handbasket. > > > >If anyone can offer some insight, I'd be very appreciative! I don't > >know when Dr. Shiels will be caling me back. I'm sure that I will > >have a biopsy soon. > > > >Thanks, > > > >Mike > > > > > > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Thanks Laurie, Like I've stated in the past, the mito and sites (folks) are all that we have to lean on in the " understanding world " of mito. Although we don't have a definite diagnosis of mito for Cassie, I hope to one day have the name/type of mito that our family is dealing with. Thanks for the support. Re: Scared...>>>> Scared...>> Hello,>> You may remember me from such posts as " Hello, " and " Hello again... " > I'm seeing Dr. shields at CCF for the possiblity of a mito DX. Igot> back my blood work, and everything is OK, except for my resting> pyruvate is double normal (0.16, normal limit is 0.08, lactate is> OK). What does this mean?>> My EMG looked pretty bad, too. It said that the test showed that I> had generalized non-necrotizing myopathy of the proximal muscles,> especially in my gluteus maximus. What does this mean (besides that> I have a flabby butt)? I looked up myopathy, and there are about100> different causes, and none of them mention necrotizing or whatever.>> I'm scared. My wife is leaving me, too. She's sick of me beingsick> (nice!) So, everything is going to hell in a handbasket.>> If anyone can offer some insight, I'd be very appreciative! I don't> know when Dr. Shiels will be caling me back. I'm sure that I will> have a biopsy soon.>> Thanks,>> Mike>>>>> Medical advice, information, opinions, data and statementscontained herein> are not necessarily those of the list moderators. The author ofthis e mail> is entirely responsible for its content. List members are remindedof their> responsibility to evaluate the content of the postings and consultwith> their physicians regarding changes in their own treatment.>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2002 Report Share Posted November 24, 2002 Mike I am so sorry I cant offer you any medical advice My husband has mito I am the healthy one But my heart breaks for you that your wife is leaving I am so sorry and know that I will be keeping you in my prayers. Hugs Jan Scared... Hello, You may remember me from such posts as " Hello, " and " Hello again... " I'm seeing Dr. shields at CCF for the possiblity of a mito DX. I got back my blood work, and everything is OK, except for my resting pyruvate is double normal (0.16, normal limit is 0.08, lactate is OK). What does this mean? My EMG looked pretty bad, too. It said that the test showed that I had generalized non-necrotizing myopathy of the proximal muscles, especially in my gluteus maximus. What does this mean (besides that I have a flabby butt)? I looked up myopathy, and there are about 100 different causes, and none of them mention necrotizing or whatever. I'm scared. My wife is leaving me, too. She's sick of me being sick (nice!) So, everything is going to hell in a handbasket. If anyone can offer some insight, I'd be very appreciative! I don't know when Dr. Shiels will be caling me back. I'm sure that I will have a biopsy soon. Thanks, Mike Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2002 Report Share Posted November 24, 2002 , You have been missed. I'm so glad you found the time to post to us and let us know how you are all doing. I'm sorry to read that Cassie is not doing very well. We all hope and pray that this will turn around soon. Hugs! Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2002 Report Share Posted November 24, 2002 Ruth, is a very special guy. I wish we could clone him. <smile> Alice --- Ruth Ilean Fox wrote: > You guys are really making me count my blessings. I > waited 49 years for > him, but have a very supportive husband. I wish all > of you could have > supportive spouses. It makes such a difference in > coping with this disease. > I don't understand the kind of love that turns its > back when the going gets > tough but did experience it from my parents and > siblings who only love in > fair weather. Ruth > > Re: Scared... > > > , > > I ma very sorry about your situation, as you can > expect, I empathise > greatly. It really stinks to be in this position, > and especially for > your daughter. It sounds like your husband needs to > find a way to > deal with these issues instead of hiding from them. > > Thanks, > > Mike > > > > > > >Hello, > > > > > >You may remember me from such posts as " Hello, " > and " Hello > again... " > > >I'm seeing Dr. shields at CCF for the possibility > of a mito DX. I > got > > >back my blood work, and everything is OK, except > for my resting > > >pyruvate is double normal (0.16, normal limit is > 0.08, lactate is > > >OK). What does this mean? > > > > > >My EMG looked pretty bad, too. It said that the > test showed that > I > > >had generalized non-necrotizing myopathy of the > proximal muscles, > > >especially in my gluteus maximus. What does this > mean (besides > that > > >I have a flabby butt)? I looked up myopathy, and > there are about > 100 > > >different causes, and none of them mention > necrotizing or whatever. > > > > > >I'm scared. My wife is leaving me, too. She's > sick of me being > sick > > >(nice!) So, everything is going to hell in a > handbasket. > > > > > >If anyone can offer some insight, I'd be very > appreciative! I > don't > > >know when Dr. Shiels will be caling me back. I'm > sure that I will > > >have a biopsy soon. > > > > > >Thanks, > > > > > >Mike > > > > > > > > > > > > > > >Medical advice, information, opinions, data and > statements > contained herein are not necessarily those of the > list moderators. > The author of this e mail is entirely responsible > for its content. > List members are reminded of their responsibility to > evaluate the > content of the postings and consult with their > physicians regarding > changes in their own treatment. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2002 Report Share Posted November 24, 2002 Thanks Alice, I'm dropping in briefly on the site again, to say hi. Unfortunately, Cassie seems to be taking another turn for the worst today. Along with the weakness that is plaguing her lungs and heart, she is also having a great deal of difficulty just trying to sit up. She has a field trip for school tomorrow of which I have plans of going on. Just not sure if she is really up to it. She is on a modified schedule for school already. She goes in at 10:30 AM and goes home at 2:00 PM. And is also on intermittent homebound. We know our days are soon to be limited in attending school because the illnesses at school will pick up in pace after Thanksgiving. We've been hoping and praying to avoid the illnesses that have appeared in the school system. We've limited her boundaries of the school setting to just the homeroom and lunchroom, too help cut down exposure. Once the illnesses seem to be present in her classroom, she will be pulled out of school to avoid them all together. She is extremely vulnerable now. So, with each day that she can attend school is a blessing for her and me. She is really looking forward to the field trip, along with the fact that she will be riding on a school bus which she does not do on a regular basis. Another concern I have for tomorrow is that she will be getting up much earlier than she is use to, not sure if that will put her in a deeper crash than what she is currently dealing with. I'm not sure what to do at this point. If she wasn't so excited about tomorrow, I would not go and without hesitation. We're trying to fulfill each wish we can at this point. Thanks for being here to listen. I know that many on this site are adults and hope to keep it to the adult spectrum ( if that is the word to use here) of mito. I hope I haven't gone overboard in mentioning the above. Wishing everyone the best Re: Scared... >, > >You have been missed. I'm so glad you found the time >to post to us and let us know how you are all doing. > > I'm sorry to read that Cassie is not doing very well. > We all hope and pray that this will turn around soon. > >Hugs! > >Alice > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2002 Report Share Posted November 24, 2002 , Good luck tomorrow and I sincerely hope that both you and Cassie have a wonderful time. I am sorry that her health is declining. It's so hard to watch your children suffer. About the " adult spectrum of Mito " - being a mom of a sick child is just another one of those experiences. I'm really happy that you took the time to share. Hugs! Alice Quote Link to comment Share on other sites More sharing options...
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