Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Our first daughter who is now 10 was diagnosed with Mitochondrial Encephalomyopathy when she was 1 year old. Her muscle biopsy was done by Dr. Shoffner. We are trying to get in to see him to hopefully find out more than the doctors are telling us. Is the diagnosis of Mitochondrial Encephalomyopathy non-specific? All this stuff is completely over my head. We were told she probably wouldn't live past the age of three. We have come close to losing her several times but she is really a fighter. We have two other daughters. The second one has Aicardi syndrome. She was also diagnosed with Angiosarcoma cancer when she was 1 and had to have her leg amputated. We have spent 10 years trying to deal with 's symptoms and keeping her well. I would love to understand her diagnosis or lack of diagnosis better and thought ya'll would be the best ones to come to. We were members of the list awhile back and had to go to no mail for awhile. I would appreciate any help anyone can give us to help us better understand all this. I read about the Complex I, II and all that but don't really understand and we have never been giving this information about . We are hoping if we can the opportunity to sit down with Dr. Shoffner that will help. Thanks so much!!! Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Hi My symptoms were similar and I had all normal test results. The first abnormal test was an EMG done before and after exercise. My leg was tested first, then I went up and down stairs for as long as I could (couldn't do that now) and both my arm and leg were tested with EMG. Both showed an abnormallity which confirmed a metabolic disorder. I then had to have a fresh muscle biopsy to get a diagnosis of mito. I have never had an elevated CPK when it was checked, but who knows if it ever does go up. My alanine is high and my lactate/pyruvate ratio was abnormal even though they were in the normal range. Welcome to the group. We are willing to share our own experiences and give support. I am glad you found us. laurie > hi. i am new and hope someone can help me. > i am a 48 year old white male with muscle weakness, exercise > intolerance, fasiculations, cramping and pain. muscles most affected > are in the calves and front of lower leg, front of the upper legs, > arms, hands and shoulders. my grip is weak, i can barely stand on my > heals and have trouble climbing stairs and getting up from chairs. i > cannot be on my feet for more than 30 to 60 minutes, stand in one > place for more than 10 minutes, or walk more than 400 meters without > sitting down. symptoms have been continuous and progressive for the > last year, but came and went for the five years before that. as the > weakness becomes greater, the pain and cramps have decreased. all > tests are normal and have included EMG, NCV, MRIs on head and entire > spine, and spinal tap. i had a muscle biopsy six years ago weeks > after all this first started, but at a time when symptoms had subsided > from the first " attack " . it was also normal. i have seen many > doctors and they have been unable to make a diagnosis other than ME > (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular > specialist who said he wouldn't order another muscle biopsy since my > CPK was not elevated and the EMG and NCV were normal. i have since > found that CPK does not have to be high in mito or inclusion body > mysositis. it makes me wonder if he was wrong about the EMG and NCV > as well. from looking up information on line, my symptoms seem to fit > adult onset mitochondrial cytopathy or inclusion body myositis (IBM). > i went back to my family physician, who actually listens to me, and > she is getting a muscle biopsy scheduled soon. > i know this is a lot of info. i am not asking anyone for a disgnosis > on line. what i really want to know is if anyone else out there has > experienced similar symptoms and test results. does this sound like > mito? could it be IBM? can electodiagnostic tests be " normal " and i > still have either of these? is a repeat muscle biopsy going to show > anything? could the " mild to moderate " signs of arthritis in my neck > and back cause any or all of this? > i am frustrated and anxious because my job as a lab tech involves a > certain amount of standing, walking and lifting, all of which are > getting harder for me as time goes on. i strongly want to work until > mandatory retirement. > i have joined a message board for IBM, and much of their info sounds > familiar. their encouragement has helped as well. > i know this is a lot of info. can anyone offer experience, advise or > sympathy? > > > > > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Hi, I'm a 69 year old widow who was mis-diagnosed with parkinsons in 2001, my previous neurologist just kept shoving " one more and one more " parkinsons med down me until I could hardly walk at all. I ended up in the ER twice with too much of one of the parkinsons meds in my system when they checked my blood level. If I hadn't had a caring and stubborn orthopaedic doctor I possibly would be in a nursing facility unable to walk by now. He never did believe I had parkinsons and when I had to leave my job as I couldn't walk the distance to my workstation he helped me get short-term disability. I lost my youngest son last August and was packing to go to Washington State for the holidays with my cousin and her husband when I got a phone call from my orthopaedic doctor stating that he wanted me to get a different neurologist as he had a new and what he believed to be a correct diagnosis for me. I told him to do whatever he thought was best to just contact my grandson as he had my DPOA for healthcare. While I was gone he fired my previous neurologist, consulted with my neurosurgeon, a " compentent " neurologist who took me as a patient, took me off all of my parkinsons meds, did a lot of testing and I have a tentative diagnosis of Mitochondrial Myopathy. I was referred to a hematologist/genetics specialist after it was discovered that I have a severe B-12 deficiency and at all three of the doctors feel that I have had this " whatever it is " since I was a child. I never was able to participate in gym for one reason or the other, some of my childhood problems were blamed on me being a " tomboy " and a just a plain old " klutz " . Many of my strange health problems were blamed on the fact that after I had diptheria as a child that I was left with a rheumatic heart condition. It goes on and on and I feel like an incompetent when my son has to come over an take my trash to the dumpster (approx six parking places from my apt) as I just can't make it that far. I start out going one direction and the next thing I know I make a " U-turn " and am going the other direction. I require assistance getting up just a few steps, mopped my kitchen with iced tea just last week when I dropped a plastic 1 1/2 quart pitcher on the floor. Of course, that was nothing in accord to the mess when I dropped a plastic bottle of catsup. I get overtired just going to the grocery store or to eat lunch at ameal site that " Meal on Wheels " has in various locations Topeka. Like you and so many of the rest, it is a neverending story and answers are not easy to come by and not very fast in coming. Just try to pray a lot and do the best you can to keep your spirits up as high as you can. It is very depressing and upsetting when I realize that I can't even change the sheets on my bed weekly, run the vacuum or be afraid to try to take a bath without a " sitter " . I just try to keep plugging away and pray that my precious Great-grandaughters will not have this problem handed down to them. Everytime I see the four month old roll her toes under it scares me to death as that was one of the things I used to do for muscle spasms a good lot of my life until they got so bad I would jump out of bed screaming. I know this really isn't giving answers but I hope in some way it will help. Dolores thegaffer23 thegaffer23@...> wrote: hi. i am new and hope someone can help me. i am a 48 year old white male with muscle weakness, exercise intolerance, fasiculations, cramping and pain. muscles most affected are in the calves and front of lower leg, front of the upper legs, arms, hands and shoulders. my grip is weak, i can barely stand on my heals and have trouble climbing stairs and getting up from chairs. i cannot be on my feet for more than 30 to 60 minutes, stand in one place for more than 10 minutes, or walk more than 400 meters without sitting down. symptoms have been continuous and progressive for the last year, but came and went for the five years before that. as the weakness becomes greater, the pain and cramps have decreased. all tests are normal and have included EMG, NCV, MRIs on head and entire spine, and spinal tap. i had a muscle biopsy six years ago weeks after all this first started, but at a time when symptoms had subsided from the first " attack " . it was also normal. i have seen many doctors and they have been unable to make a diagnosis other than ME (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular specialist who said he wouldn't order another muscle biopsy since my CPK was not elevated and the EMG and NCV were normal. i have since found that CPK does not have to be high in mito or inclusion body mysositis. it makes me wonder if he was wrong about the EMG and NCV as well. from looking up information on line, my symptoms seem to fit adult onset mitochondrial cytopathy or inclusion body myositis (IBM). i went back to my family physician, who actually listens to me, and she is getting a muscle biopsy scheduled soon. i know this is a lot of info. i am not asking anyone for a disgnosis on line. what i really want to know is if anyone else out there has experienced similar symptoms and test results. does this sound like mito? could it be IBM? can electodiagnostic tests be " normal " and i still have either of these? is a repeat muscle biopsy going to show anything? could the " mild to moderate " signs of arthritis in my neck and back cause any or all of this? i am frustrated and anxious because my job as a lab tech involves a certain amount of standing, walking and lifting, all of which are getting harder for me as time goes on. i strongly want to work until mandatory retirement. i have joined a message board for IBM, and much of their info sounds familiar. their encouragement has helped as well. i know this is a lot of info. can anyone offer experience, advise or sympathy? 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. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 HI It sounds like me when it first started to affect my daily living. Major difficulty of walking and standing started in November 1984 when I was 43. I had to stop working in April 1985 as it was too much for me. I had one muscle biopsy in 1985, 1987 and 1993. The diagnosis of mitochondrial myopathy was given to me in 1993. It does resemble chronic fatigue syndrome or fibromyalgia. There is also similarities with other neuro-muscular disders. In 1994, i started to use a scooter, and I found this very helpful. Since I was walking less, i no longer had pain in my legs and I had more energy to do more activities. If you did get a scooter, you might be able to work longer. But if you do, you must walk as much as you can to get the exercise. Instead of telling the neurologist what to look for, it would be best to be referred to another neurologist for a second opinion. I hope that this has been helpful. cheers, J.P. > hi. i am new and hope someone can help me. > i am a 48 year old white male with muscle weakness, exercise > intolerance, fasiculations, cramping and pain. muscles most affected > are in the calves and front of lower leg, front of the upper legs, > arms, hands and shoulders. my grip is weak, i can barely stand on my > heals and have trouble climbing stairs and getting up from chairs. i > cannot be on my feet for more than 30 to 60 minutes, stand in one > place for more than 10 minutes, or walk more than 400 meters without > sitting down. symptoms have been continuous and progressive for the > last year, but came and went for the five years before that. as the > weakness becomes greater, the pain and cramps have decreased. all > tests are normal and have included EMG, NCV, MRIs on head and entire > spine, and spinal tap. i had a muscle biopsy six years ago weeks > after all this first started, but at a time when symptoms had subsided > from the first " attack " . it was also normal. i have seen many > doctors and they have been unable to make a diagnosis other than ME > (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular > specialist who said he wouldn't order another muscle biopsy since my > CPK was not elevated and the EMG and NCV were normal. i have since > found that CPK does not have to be high in mito or inclusion body > mysositis. it makes me wonder if he was wrong about the EMG and NCV > as well. from looking up information on line, my symptoms seem to fit > adult onset mitochondrial cytopathy or inclusion body myositis (IBM). > i went back to my family physician, who actually listens to me, and > she is getting a muscle biopsy scheduled soon. > i know this is a lot of info. i am not asking anyone for a disgnosis > on line. what i really want to know is if anyone else out there has > experienced similar symptoms and test results. does this sound like > mito? could it be IBM? can electodiagnostic tests be " normal " and i > still have either of these? is a repeat muscle biopsy going to show > anything? could the " mild to moderate " signs of arthritis in my neck > and back cause any or all of this? > i am frustrated and anxious because my job as a lab tech involves a > certain amount of standing, walking and lifting, all of which are > getting harder for me as time goes on. i strongly want to work until > mandatory retirement. > i have joined a message board for IBM, and much of their info sounds > familiar. their encouragement has helped as well. > i know this is a lot of info. can anyone offer experience, advise or > sympathy? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 thanks to you, too, Dolores. i just didn't see your response until after i posted my last message. knowing i am not alone really helps. i'll keep praying if you will. kent > hi. i am new and hope someone can help me. > i am a 48 year old white male with muscle weakness, exercise > intolerance, fasiculations, cramping and pain. muscles most affected > are in the calves and front of lower leg, front of the upper legs, > arms, hands and shoulders. my grip is weak, i can barely stand on my > heals and have trouble climbing stairs and getting up from chairs. i > cannot be on my feet for more than 30 to 60 minutes, stand in one > place for more than 10 minutes, or walk more than 400 meters without > sitting down. symptoms have been continuous and progressive for the > last year, but came and went for the five years before that. as the > weakness becomes greater, the pain and cramps have decreased. all > tests are normal and have included EMG, NCV, MRIs on head and entire > spine, and spinal tap. i had a muscle biopsy six years ago weeks > after all this first started, but at a time when symptoms had subsided > from the first " attack " . it was also normal. i have seen many > doctors and they have been unable to make a diagnosis other than ME > (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular > specialist who said he wouldn't order another muscle biopsy since my > CPK was not elevated and the EMG and NCV were normal. i have since > found that CPK does not have to be high in mito or inclusion body > mysositis. it makes me wonder if he was wrong about the EMG and NCV > as well. from looking up information on line, my symptoms seem to fit > adult onset mitochondrial cytopathy or inclusion body myositis (IBM). > i went back to my family physician, who actually listens to me, and > she is getting a muscle biopsy scheduled soon. > i know this is a lot of info. i am not asking anyone for a disgnosis > on line. what i really want to know is if anyone else out there has > experienced similar symptoms and test results. does this sound like > mito? could it be IBM? can electodiagnostic tests be " normal " and i > still have either of these? is a repeat muscle biopsy going to show > anything? could the " mild to moderate " signs of arthritis in my neck > and back cause any or all of this? > i am frustrated and anxious because my job as a lab tech involves a > certain amount of standing, walking and lifting, all of which are > getting harder for me as time goes on. i strongly want to work until > mandatory retirement. > i have joined a message board for IBM, and much of their info sounds > familiar. their encouragement has helped as well. > i know this is a lot of info. can anyone offer experience, advise or > sympathy? > > > > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Hi, Well, what I can tell you, is that it took seven years to get a diagnosis & I think I went through it all & had it all done! But, interestingly, it wasn't until my biopsy that I was diagnosed... My CPK was normal & the EMG showed a bit of something, but was essentially normal. So, I'm here to say it does happen... I hope your physician is able to get the biopsy scheduled for you. You may want to consider going straight to the Cleveland Clinic however since many false negatives have been reported when the biopsy has been frozen for transport... Chris In a message dated 6/1/2005 12:31:57 A.M. Eastern Daylight Time, writes: Subject: diagnosis hi. i am new and hope someone can help me. i am a 48 year old white male with muscle weakness, exercise intolerance, fasiculations, cramping and pain. muscles most affected are in the calves and front of lower leg, front of the upper legs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 It can be very frustrating to try to get a diagnosis. I also had many " normal " tests- spinal tap,blood work etc. My cpk has never been high.I just got the diagnosis of mito in Feb by a muscle biopsy but just had to have another one because there was not enough tissue to do more extensive tests to further define it. I won't have the results until July or Aug. Just keep trying to get answers.I also had similar symptoms also and just recently had to go on disability through my work ( I am a RN). Keep us posted. kent thegaffer23@...> wrote: thanks to you, too, Dolores. i just didn't see your response until after i posted my last message. knowing i am not alone really helps. i'll keep praying if you will. kent > hi. i am new and hope someone can help me. > i am a 48 year old white male with muscle weakness, exercise > intolerance, fasiculations, cramping and pain. muscles most affected > are in the calves and front of lower leg, front of the upper legs, > arms, hands and shoulders. my grip is weak, i can barely stand on my > heals and have trouble climbing stairs and getting up from chairs. i > cannot be on my feet for more than 30 to 60 minutes, stand in one > place for more than 10 minutes, or walk more than 400 meters without > sitting down. symptoms have been continuous and progressive for the > last year, but came and went for the five years before that. as the > weakness becomes greater, the pain and cramps have decreased. all > tests are normal and have included EMG, NCV, MRIs on head and entire > spine, and spinal tap. i had a muscle biopsy six years ago weeks > after all this first started, but at a time when symptoms had subsided > from the first " attack " . it was also normal. i have seen many > doctors and they have been unable to make a diagnosis other than ME > (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular > specialist who said he wouldn't order another muscle biopsy since my > CPK was not elevated and the EMG and NCV were normal. i have since > found that CPK does not have to be high in mito or inclusion body > mysositis. it makes me wonder if he was wrong about the EMG and NCV > as well. from looking up information on line, my symptoms seem to fit > adult onset mitochondrial cytopathy or inclusion body myositis (IBM). > i went back to my family physician, who actually listens to me, and > she is getting a muscle biopsy scheduled soon. > i know this is a lot of info. i am not asking anyone for a disgnosis > on line. what i really want to know is if anyone else out there has > experienced similar symptoms and test results. does this sound like > mito? could it be IBM? can electodiagnostic tests be " normal " and i > still have either of these? is a repeat muscle biopsy going to show > anything? could the " mild to moderate " signs of arthritis in my neck > and back cause any or all of this? > i am frustrated and anxious because my job as a lab tech involves a > certain amount of standing, walking and lifting, all of which are > getting harder for me as time goes on. i strongly want to work until > mandatory retirement. > i have joined a message board for IBM, and much of their info sounds > familiar. their encouragement has helped as well. > i know this is a lot of info. can anyone offer experience, advise or > sympathy? > > > > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Hi. I am a 28 year old who has been diagnosed since 1995. I am one of the lucky ones who was diagnosed within 4 1/2 years of starting symptoms. I was diagnosed through muscle biopsy. One thing that still confuses doctors is that my EMG's are always normal. I am sure they might be abnormal if I exercised first. I remember reading in a report that my CPK levels were also normal. It does happen. Welcome to the group and feel free to ask any questions you have. Smiles, a K. On Tue, 31 May 2005 13:57:48 -0000 " thegaffer23 " thegaffer23@...> writes: hi. i am new and hope someone can help me. i am a 48 year old white male with muscle weakness, exercise intolerance, fasiculations, cramping and pain. muscles most affected are in the calves and front of lower leg, front of the upper legs, arms, hands and shoulders. my grip is weak, i can barely stand on my heals and have trouble climbing stairs and getting up from chairs. i cannot be on my feet for more than 30 to 60 minutes, stand in one place for more than 10 minutes, or walk more than 400 meters without sitting down. symptoms have been continuous and progressive for the last year, but came and went for the five years before that. as the weakness becomes greater, the pain and cramps have decreased. all tests are normal and have included EMG, NCV, MRIs on head and entire spine, and spinal tap. i had a muscle biopsy six years ago weeks after all this first started, but at a time when symptoms had subsided from the first " attack " . it was also normal. i have seen many doctors and they have been unable to make a diagnosis other than ME (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular specialist who said he wouldn't order another muscle biopsy since my CPK was not elevated and the EMG and NCV were normal. i have since found that CPK does not have to be high in mito or inclusion body mysositis. it makes me wonder if he was wrong about the EMG and NCV as well. from looking up information on line, my symptoms seem to fit adult onset mitochondrial cytopathy or inclusion body myositis (IBM). i went back to my family physician, who actually listens to me, and she is getting a muscle biopsy scheduled soon. i know this is a lot of info. i am not asking anyone for a disgnosis on line. what i really want to know is if anyone else out there has experienced similar symptoms and test results. does this sound like mito? could it be IBM? can electodiagnostic tests be " normal " and i still have either of these? is a repeat muscle biopsy going to show anything? could the " mild to moderate " signs of arthritis in my neck and back cause any or all of this? i am frustrated and anxious because my job as a lab tech involves a certain amount of standing, walking and lifting, all of which are getting harder for me as time goes on. i strongly want to work until mandatory retirement. i have joined a message board for IBM, and much of their info sounds familiar. their encouragement has helped as well. i know this is a lot of info. can anyone offer experience, advise or sympathy? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 a My abnormal EMGs have become normal since being on he supplements. That was nice to find out. laurie > Hi. I am a 28 year old who has been diagnosed since 1995. I am one of > the lucky ones who was diagnosed within 4 1/2 years of starting symptoms. > I was diagnosed through muscle biopsy. One thing that still confuses > doctors is that my EMG's are always normal. I am sure they might be > abnormal if I exercised first. I remember reading in a report that my > CPK levels were also normal. It does happen. Welcome to the group and > feel free to ask any questions you have. > > Smiles, > a K. > > On Tue, 31 May 2005 13:57:48 -0000 " thegaffer23 " thegaffer23@...> > writes: > hi. i am new and hope someone can help me. > i am a 48 year old white male with muscle weakness, exercise > intolerance, fasiculations, cramping and pain. muscles most affected > are in the calves and front of lower leg, front of the upper legs, > arms, hands and shoulders. my grip is weak, i can barely stand on my > heals and have trouble climbing stairs and getting up from chairs. i > cannot be on my feet for more than 30 to 60 minutes, stand in one > place for more than 10 minutes, or walk more than 400 meters without > sitting down. symptoms have been continuous and progressive for the > last year, but came and went for the five years before that. as the > weakness becomes greater, the pain and cramps have decreased. all > tests are normal and have included EMG, NCV, MRIs on head and entire > spine, and spinal tap. i had a muscle biopsy six years ago weeks > after all this first started, but at a time when symptoms had subsided > from the first " attack " . it was also normal. i have seen many > doctors and they have been unable to make a diagnosis other than ME > (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular > specialist who said he wouldn't order another muscle biopsy since my > CPK was not elevated and the EMG and NCV were normal. i have since > found that CPK does not have to be high in mito or inclusion body > mysositis. it makes me wonder if he was wrong about the EMG and NCV > as well. from looking up information on line, my symptoms seem to fit > adult onset mitochondrial cytopathy or inclusion body myositis (IBM). > i went back to my family physician, who actually listens to me, and > she is getting a muscle biopsy scheduled soon. > i know this is a lot of info. i am not asking anyone for a disgnosis > on line. what i really want to know is if anyone else out there has > experienced similar symptoms and test results. does this sound like > mito? could it be IBM? can electodiagnostic tests be " normal " and i > still have either of these? is a repeat muscle biopsy going to show > anything? could the " mild to moderate " signs of arthritis in my neck > and back cause any or all of this? > i am frustrated and anxious because my job as a lab tech involves a > certain amount of standing, walking and lifting, all of which are > getting harder for me as time goes on. i strongly want to work until > mandatory retirement. > i have joined a message board for IBM, and much of their info sounds > familiar. their encouragement has helped as well. > i know this is a lot of info. can anyone offer experience, advise or > sympathy? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 a My abnormal EMGs have become normal since being on he supplements. That was nice to find out. laurie > Hi. I am a 28 year old who has been diagnosed since 1995. I am one of > the lucky ones who was diagnosed within 4 1/2 years of starting symptoms. > I was diagnosed through muscle biopsy. One thing that still confuses > doctors is that my EMG's are always normal. I am sure they might be > abnormal if I exercised first. I remember reading in a report that my > CPK levels were also normal. It does happen. Welcome to the group and > feel free to ask any questions you have. > > Smiles, > a K. > > On Tue, 31 May 2005 13:57:48 -0000 " thegaffer23 " thegaffer23@...> > writes: > hi. i am new and hope someone can help me. > i am a 48 year old white male with muscle weakness, exercise > intolerance, fasiculations, cramping and pain. muscles most affected > are in the calves and front of lower leg, front of the upper legs, > arms, hands and shoulders. my grip is weak, i can barely stand on my > heals and have trouble climbing stairs and getting up from chairs. i > cannot be on my feet for more than 30 to 60 minutes, stand in one > place for more than 10 minutes, or walk more than 400 meters without > sitting down. symptoms have been continuous and progressive for the > last year, but came and went for the five years before that. as the > weakness becomes greater, the pain and cramps have decreased. all > tests are normal and have included EMG, NCV, MRIs on head and entire > spine, and spinal tap. i had a muscle biopsy six years ago weeks > after all this first started, but at a time when symptoms had subsided > from the first " attack " . it was also normal. i have seen many > doctors and they have been unable to make a diagnosis other than ME > (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular > specialist who said he wouldn't order another muscle biopsy since my > CPK was not elevated and the EMG and NCV were normal. i have since > found that CPK does not have to be high in mito or inclusion body > mysositis. it makes me wonder if he was wrong about the EMG and NCV > as well. from looking up information on line, my symptoms seem to fit > adult onset mitochondrial cytopathy or inclusion body myositis (IBM). > i went back to my family physician, who actually listens to me, and > she is getting a muscle biopsy scheduled soon. > i know this is a lot of info. i am not asking anyone for a disgnosis > on line. what i really want to know is if anyone else out there has > experienced similar symptoms and test results. does this sound like > mito? could it be IBM? can electodiagnostic tests be " normal " and i > still have either of these? is a repeat muscle biopsy going to show > anything? could the " mild to moderate " signs of arthritis in my neck > and back cause any or all of this? > i am frustrated and anxious because my job as a lab tech involves a > certain amount of standing, walking and lifting, all of which are > getting harder for me as time goes on. i strongly want to work until > mandatory retirement. > i have joined a message board for IBM, and much of their info sounds > familiar. their encouragement has helped as well. > i know this is a lot of info. can anyone offer experience, advise or > sympathy? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Thanks for your kind thoughts and prayers. When I came back from my cousins in January my first EMG was problematic as Dr. Baker was confident it would be. I feel at ease and very confident with all of my doctors, except my PCP, I have a PPO policy with Cigna but she still demands to see me prior to going to another kind of doctor at all. I certainly dread to be at the mercy of Medicare in 2006. Thanks for your kind thoughts prayers, Dolores Bristow lanebristow@...> wrote:It can be very frustrating to try to get a diagnosis. I also had many " normal " tests- spinal tap,blood work etc. My cpk has never been high.I just got the diagnosis of mito in Feb by a muscle biopsy but just had to have another one because there was not enough tissue to do more extensive tests to further define it. I won't have the results until July or Aug. Just keep trying to get answers.I also had similar symptoms also and just recently had to go on disability through my work ( I am a RN). Keep us posted. kent thegaffer23@...> wrote: thanks to you, too, Dolores. i just didn't see your response until after i posted my last message. knowing i am not alone really helps. i'll keep praying if you will. kent > hi. i am new and hope someone can help me. > i am a 48 year old white male with muscle weakness, exercise > intolerance, fasiculations, cramping and pain. muscles most affected > are in the calves and front of lower leg, front of the upper legs, > arms, hands and shoulders. my grip is weak, i can barely stand on my > heals and have trouble climbing stairs and getting up from chairs. i > cannot be on my feet for more than 30 to 60 minutes, stand in one > place for more than 10 minutes, or walk more than 400 meters without > sitting down. symptoms have been continuous and progressive for the > last year, but came and went for the five years before that. as the > weakness becomes greater, the pain and cramps have decreased. all > tests are normal and have included EMG, NCV, MRIs on head and entire > spine, and spinal tap. i had a muscle biopsy six years ago weeks > after all this first started, but at a time when symptoms had subsided > from the first " attack " . it was also normal. i have seen many > doctors and they have been unable to make a diagnosis other than ME > (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular > specialist who said he wouldn't order another muscle biopsy since my > CPK was not elevated and the EMG and NCV were normal. i have since > found that CPK does not have to be high in mito or inclusion body > mysositis. it makes me wonder if he was wrong about the EMG and NCV > as well. from looking up information on line, my symptoms seem to fit > adult onset mitochondrial cytopathy or inclusion body myositis (IBM). > i went back to my family physician, who actually listens to me, and > she is getting a muscle biopsy scheduled soon. > i know this is a lot of info. i am not asking anyone for a disgnosis > on line. what i really want to know is if anyone else out there has > experienced similar symptoms and test results. does this sound like > mito? could it be IBM? can electodiagnostic tests be " normal " and i > still have either of these? is a repeat muscle biopsy going to show > anything? could the " mild to moderate " signs of arthritis in my neck > and back cause any or all of this? > i am frustrated and anxious because my job as a lab tech involves a > certain amount of standing, walking and lifting, all of which are > getting harder for me as time goes on. i strongly want to work until > mandatory retirement. > i have joined a message board for IBM, and much of their info sounds > familiar. their encouragement has helped as well. > i know this is a lot of info. can anyone offer experience, advise or > sympathy? > > > > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 linda, how long from onset of symptoms until dx? how long were you able to work? kent > > hi. i am new and hope someone can help me. > > i am a 48 year old white male with muscle weakness, exercise > > intolerance, fasiculations, cramping and pain. muscles most affected > > are in the calves and front of lower leg, front of the upper legs, > > arms, hands and shoulders. my grip is weak, i can barely stand on my > > heals and have trouble climbing stairs and getting up from chairs. i > > cannot be on my feet for more than 30 to 60 minutes, stand in one > > place for more than 10 minutes, or walk more than 400 meters without > > sitting down. symptoms have been continuous and progressive for the > > last year, but came and went for the five years before that. as the > > weakness becomes greater, the pain and cramps have decreased. all > > tests are normal and have included EMG, NCV, MRIs on head and entire > > spine, and spinal tap. i had a muscle biopsy six years ago weeks > > after all this first started, but at a time when symptoms had subsided > > from the first " attack " . it was also normal. i have seen many > > doctors and they have been unable to make a diagnosis other than ME > > (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular > > specialist who said he wouldn't order another muscle biopsy since my > > CPK was not elevated and the EMG and NCV were normal. i have since > > found that CPK does not have to be high in mito or inclusion body > > mysositis. it makes me wonder if he was wrong about the EMG and NCV > > as well. from looking up information on line, my symptoms seem to fit > > adult onset mitochondrial cytopathy or inclusion body myositis (IBM). > > i went back to my family physician, who actually listens to me, and > > she is getting a muscle biopsy scheduled soon. > > i know this is a lot of info. i am not asking anyone for a disgnosis > > on line. what i really want to know is if anyone else out there has > > experienced similar symptoms and test results. does this sound like > > mito? could it be IBM? can electodiagnostic tests be " normal " and i > > still have either of these? is a repeat muscle biopsy going to show > > anything? could the " mild to moderate " signs of arthritis in my neck > > and back cause any or all of this? > > i am frustrated and anxious because my job as a lab tech involves a > > certain amount of standing, walking and lifting, all of which are > > getting harder for me as time goes on. i strongly want to work until > > mandatory retirement. > > i have joined a message board for IBM, and much of their info sounds > > familiar. their encouragement has helped as well. > > i know this is a lot of info. can anyone offer experience, advise or > > sympathy? > > > > > > > > > > > > > > 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. > > > > Personal attacks are not permitted on the list and anyone who sends > one is automatically moderated or removed depending on the severity of > the attack. > > > > > > > > > > --------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 linda, how long from onset of symptoms until dx? how long were you able to work? kent > > hi. i am new and hope someone can help me. > > i am a 48 year old white male with muscle weakness, exercise > > intolerance, fasiculations, cramping and pain. muscles most affected > > are in the calves and front of lower leg, front of the upper legs, > > arms, hands and shoulders. my grip is weak, i can barely stand on my > > heals and have trouble climbing stairs and getting up from chairs. i > > cannot be on my feet for more than 30 to 60 minutes, stand in one > > place for more than 10 minutes, or walk more than 400 meters without > > sitting down. symptoms have been continuous and progressive for the > > last year, but came and went for the five years before that. as the > > weakness becomes greater, the pain and cramps have decreased. all > > tests are normal and have included EMG, NCV, MRIs on head and entire > > spine, and spinal tap. i had a muscle biopsy six years ago weeks > > after all this first started, but at a time when symptoms had subsided > > from the first " attack " . it was also normal. i have seen many > > doctors and they have been unable to make a diagnosis other than ME > > (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular > > specialist who said he wouldn't order another muscle biopsy since my > > CPK was not elevated and the EMG and NCV were normal. i have since > > found that CPK does not have to be high in mito or inclusion body > > mysositis. it makes me wonder if he was wrong about the EMG and NCV > > as well. from looking up information on line, my symptoms seem to fit > > adult onset mitochondrial cytopathy or inclusion body myositis (IBM). > > i went back to my family physician, who actually listens to me, and > > she is getting a muscle biopsy scheduled soon. > > i know this is a lot of info. i am not asking anyone for a disgnosis > > on line. what i really want to know is if anyone else out there has > > experienced similar symptoms and test results. does this sound like > > mito? could it be IBM? can electodiagnostic tests be " normal " and i > > still have either of these? is a repeat muscle biopsy going to show > > anything? could the " mild to moderate " signs of arthritis in my neck > > and back cause any or all of this? > > i am frustrated and anxious because my job as a lab tech involves a > > certain amount of standing, walking and lifting, all of which are > > getting harder for me as time goes on. i strongly want to work until > > mandatory retirement. > > i have joined a message board for IBM, and much of their info sounds > > familiar. their encouragement has helped as well. > > i know this is a lot of info. can anyone offer experience, advise or > > sympathy? > > > > > > > > > > > > > > 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. > > > > Personal attacks are not permitted on the list and anyone who sends > one is automatically moderated or removed depending on the severity of > the attack. > > > > > > > > > > --------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 a, where did you have your bx? fresh or frozen? (sounds a little like paper or plastic, doesn't it?) kent > Hi. I am a 28 year old who has been diagnosed since 1995. I am one of > the lucky ones who was diagnosed within 4 1/2 years of starting symptoms. > I was diagnosed through muscle biopsy. One thing that still confuses > doctors is that my EMG's are always normal. I am sure they might be > abnormal if I exercised first. I remember reading in a report that my > CPK levels were also normal. It does happen. Welcome to the group and > feel free to ask any questions you have. > > Smiles, > a K. > > On Tue, 31 May 2005 13:57:48 -0000 " thegaffer23 " > writes: > hi. i am new and hope someone can help me. > i am a 48 year old white male with muscle weakness, exercise > intolerance, fasiculations, cramping and pain. muscles most affected > are in the calves and front of lower leg, front of the upper legs, > arms, hands and shoulders. my grip is weak, i can barely stand on my > heals and have trouble climbing stairs and getting up from chairs. i > cannot be on my feet for more than 30 to 60 minutes, stand in one > place for more than 10 minutes, or walk more than 400 meters without > sitting down. symptoms have been continuous and progressive for the > last year, but came and went for the five years before that. as the > weakness becomes greater, the pain and cramps have decreased. all > tests are normal and have included EMG, NCV, MRIs on head and entire > spine, and spinal tap. i had a muscle biopsy six years ago weeks > after all this first started, but at a time when symptoms had subsided > from the first " attack " . it was also normal. i have seen many > doctors and they have been unable to make a diagnosis other than ME > (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular > specialist who said he wouldn't order another muscle biopsy since my > CPK was not elevated and the EMG and NCV were normal. i have since > found that CPK does not have to be high in mito or inclusion body > mysositis. it makes me wonder if he was wrong about the EMG and NCV > as well. from looking up information on line, my symptoms seem to fit > adult onset mitochondrial cytopathy or inclusion body myositis (IBM). > i went back to my family physician, who actually listens to me, and > she is getting a muscle biopsy scheduled soon. > i know this is a lot of info. i am not asking anyone for a disgnosis > on line. what i really want to know is if anyone else out there has > experienced similar symptoms and test results. does this sound like > mito? could it be IBM? can electodiagnostic tests be " normal " and i > still have either of these? is a repeat muscle biopsy going to show > anything? could the " mild to moderate " signs of arthritis in my neck > and back cause any or all of this? > i am frustrated and anxious because my job as a lab tech involves a > certain amount of standing, walking and lifting, all of which are > getting harder for me as time goes on. i strongly want to work until > mandatory retirement. > i have joined a message board for IBM, and much of their info sounds > familiar. their encouragement has helped as well. > i know this is a lot of info. can anyone offer experience, advise or > sympathy? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 a, where did you have your bx? fresh or frozen? (sounds a little like paper or plastic, doesn't it?) kent > Hi. I am a 28 year old who has been diagnosed since 1995. I am one of > the lucky ones who was diagnosed within 4 1/2 years of starting symptoms. > I was diagnosed through muscle biopsy. One thing that still confuses > doctors is that my EMG's are always normal. I am sure they might be > abnormal if I exercised first. I remember reading in a report that my > CPK levels were also normal. It does happen. Welcome to the group and > feel free to ask any questions you have. > > Smiles, > a K. > > On Tue, 31 May 2005 13:57:48 -0000 " thegaffer23 " > writes: > hi. i am new and hope someone can help me. > i am a 48 year old white male with muscle weakness, exercise > intolerance, fasiculations, cramping and pain. muscles most affected > are in the calves and front of lower leg, front of the upper legs, > arms, hands and shoulders. my grip is weak, i can barely stand on my > heals and have trouble climbing stairs and getting up from chairs. i > cannot be on my feet for more than 30 to 60 minutes, stand in one > place for more than 10 minutes, or walk more than 400 meters without > sitting down. symptoms have been continuous and progressive for the > last year, but came and went for the five years before that. as the > weakness becomes greater, the pain and cramps have decreased. all > tests are normal and have included EMG, NCV, MRIs on head and entire > spine, and spinal tap. i had a muscle biopsy six years ago weeks > after all this first started, but at a time when symptoms had subsided > from the first " attack " . it was also normal. i have seen many > doctors and they have been unable to make a diagnosis other than ME > (Chronic Fatigue Syndrome). the last one i saw was a neuromuscular > specialist who said he wouldn't order another muscle biopsy since my > CPK was not elevated and the EMG and NCV were normal. i have since > found that CPK does not have to be high in mito or inclusion body > mysositis. it makes me wonder if he was wrong about the EMG and NCV > as well. from looking up information on line, my symptoms seem to fit > adult onset mitochondrial cytopathy or inclusion body myositis (IBM). > i went back to my family physician, who actually listens to me, and > she is getting a muscle biopsy scheduled soon. > i know this is a lot of info. i am not asking anyone for a disgnosis > on line. what i really want to know is if anyone else out there has > experienced similar symptoms and test results. does this sound like > mito? could it be IBM? can electodiagnostic tests be " normal " and i > still have either of these? is a repeat muscle biopsy going to show > anything? could the " mild to moderate " signs of arthritis in my neck > and back cause any or all of this? > i am frustrated and anxious because my job as a lab tech involves a > certain amount of standing, walking and lifting, all of which are > getting harder for me as time goes on. i strongly want to work until > mandatory retirement. > i have joined a message board for IBM, and much of their info sounds > familiar. their encouragement has helped as well. > i know this is a lot of info. can anyone offer experience, advise or > sympathy? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 My EMG and single-fiber EMG studies were normal, and my CPK values have always been normal (I have a mito dx by fresh muscle biopsy). Take care, RH > > Hi, > > Well, what I can tell you, is that it took seven years to get a diagnosis & > I think I went through it all & had it all done! But, interestingly, it > wasn't until my biopsy that I was diagnosed... My CPK was normal & the EMG showed > a bit of something, but was essentially normal. So, I'm here to say it does > happen... > > I hope your physician is able to get the biopsy scheduled for you. You may > want to consider going straight to the Cleveland Clinic however since many > false negatives have been reported when the biopsy has been frozen for > transport... > > Chris > In a message dated 6/1/2005 12:31:57 A.M. Eastern Daylight Time, > writes: > > Subject: diagnosis > > hi. i am new and hope someone can help me. > i am a 48 year old white male with muscle weakness, exercise > intolerance, fasiculations, cramping and pain. muscles most affected > are in the calves and front of lower leg, front of the upper legs, > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 My EMG and single-fiber EMG studies were normal, and my CPK values have always been normal (I have a mito dx by fresh muscle biopsy). Take care, RH > > Hi, > > Well, what I can tell you, is that it took seven years to get a diagnosis & > I think I went through it all & had it all done! But, interestingly, it > wasn't until my biopsy that I was diagnosed... My CPK was normal & the EMG showed > a bit of something, but was essentially normal. So, I'm here to say it does > happen... > > I hope your physician is able to get the biopsy scheduled for you. You may > want to consider going straight to the Cleveland Clinic however since many > false negatives have been reported when the biopsy has been frozen for > transport... > > Chris > In a message dated 6/1/2005 12:31:57 A.M. Eastern Daylight Time, > writes: > > Subject: diagnosis > > hi. i am new and hope someone can help me. > i am a 48 year old white male with muscle weakness, exercise > intolerance, fasiculations, cramping and pain. muscles most affected > are in the calves and front of lower leg, front of the upper legs, > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 Kent, My biopsy was done here in Iowa, but was then sent to Columbia Presbyterian and diagnosed by Dr. DiMauro. My neurologist was in close contact with him throughout the two years my neuro was here. It was a frozen biopsy (I presume), but since I didn't know what they were testing for, as he told us he was testing for various things, I am not sure. I was just 18 and didn't know anything about mito, but that was also 10 years ago. I have learned a lot since then and always know why things are being done now. I hope some of this helps. Smiles, a K. On Wed, 01 Jun 2005 20:51:46 -0000 " kent " thegaffer23@...> writes: a, where did you have your bx? fresh or frozen? (sounds a little like paper or plastic, doesn't it?) kent > Hi. I am a 28 year old who has been diagnosed since 1995. I am one of > the lucky ones who was diagnosed within 4 1/2 years of starting symptoms. > I was diagnosed through muscle biopsy. One thing that still confuses > doctors is that my EMG's are always normal. I am sure they might be > abnormal if I exercised first. I remember reading in a report that my > CPK levels were also normal. It does happen. Welcome to the group and > feel free to ask any questions you have. > > Smiles, > a K. > > On Tue, 31 May 2005 13:57:48 -0000 " thegaffer23 " > writes: > hi. i am new and hope someone can help me. > i am a 48 year old white male with muscle weakness, exercise > intolerance, fasiculations, cramping and pain. muscles most affected > are in the calves and front of lower leg, front of the upper Quote Link to comment Share on other sites More sharing options...
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