Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 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 Hello-I'm sure others will offer their experience, but yes, EMG and NCV can be normal in mito, though mine are not. As for muscle biopsy, unfortunately for people with rare or uncommon disorders, those are often " wasted " because the correct testing is not ordered and they are pronounced " normal. " Only a few labs in the country can perform the necessary testing reliably---specific enzyme assays. I'm sure others will have plenty to share with you. Many of us went through the same long period undiagnosed. I waited 19 years for the first diagnosis and another 15 for the second. I happen to have two coexisting mito disorders. Take care, Barbara _____ From: [mailto: ] On Behalf Of thegaffer23 Sent: Tuesday, May 31, 2005 8:58 AM To: 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, 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 PS. Has your doctor considered one of the metabolic myopathies? Myoadenylate deaminase deficiency is the most common. One out of five in the general population are carriers and one out of twenty have it, though it does not always cause symptoms. There is also McArdle's disease and carnitine palmitoyltransferase deficiency (CPT deficiency). All cause exercise intolerance, muscle cramping, etc. though in most cases the symptoms are life-long. Diagnosis is by muscle biopsy with specific enzyme assays performed to locate any deficiencies. Barbara _____ From: [mailto: ] On Behalf Of Barbara Seaman Sent: Tuesday, May 31, 2005 9:52 AM To: Subject: RE: diagnosis Hello-I'm sure others will offer their experience, but yes, EMG and NCV can be normal in mito, though mine are not. As for muscle biopsy, unfortunately for people with rare or uncommon disorders, those are often " wasted " because the correct testing is not ordered and they are pronounced " normal. " Only a few labs in the country can perform the necessary testing reliably---specific enzyme assays. I'm sure others will have plenty to share with you. Many of us went through the same long period undiagnosed. I waited 19 years for the first diagnosis and another 15 for the second. I happen to have two coexisting mito disorders. Take care, Barbara _____ From: [mailto: ] On Behalf Of thegaffer23 Sent: Tuesday, May 31, 2005 8:58 AM To: 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, 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 also undiagnosed, but have some of the same problems as far as muscle weakness, dasiculations, cramping and pain. My weakness initially started in my legs, but I am noticing it more and more in my arms as well. I also have trouble getting up from a sitting position, seems like the message just doesn't get all the way to the legs, or it does and the legs just won't support me. I have had several normal tests as well. Am waiting on appointments with neuros. Sounds like you have a good primary care doctor, can you request a second opinion from another neurologist as well? I had to change PCP's (my first did't take me seriously) and am also waiting to see a second and third neuro. I can relate to your frustration and can empathize with where you are at. Take care, a > 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 Hi, I am also undiagnosed, but have some of the same problems as far as muscle weakness, dasiculations, cramping and pain. My weakness initially started in my legs, but I am noticing it more and more in my arms as well. I also have trouble getting up from a sitting position, seems like the message just doesn't get all the way to the legs, or it does and the legs just won't support me. I have had several normal tests as well. Am waiting on appointments with neuros. Sounds like you have a good primary care doctor, can you request a second opinion from another neurologist as well? I had to change PCP's (my first did't take me seriously) and am also waiting to see a second and third neuro. I can relate to your frustration and can empathize with where you are at. Take care, a > 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 2, 2005 Report Share Posted June 2, 2005 Kent, It took about 14 mos for a diagnosis . I was diagnosed in Feb of this year and just went on disability in May on the advise of my pulmo dr. Also, I think my boss viewed me as a liability and I felt like I needed to be cooperative. I am on short term disability now until August and it will roll over into longterm disability.I hope you can get some answers soon. It can be very frustrating! kent thegaffer23@...> wrote: 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 2, 2005 Report Share Posted June 2, 2005 Kent, It took about 14 mos for a diagnosis . I was diagnosed in Feb of this year and just went on disability in May on the advise of my pulmo dr. Also, I think my boss viewed me as a liability and I felt like I needed to be cooperative. I am on short term disability now until August and it will roll over into longterm disability.I hope you can get some answers soon. It can be very frustrating! kent thegaffer23@...> wrote: 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 3, 2005 Report Share Posted June 3, 2005 a, i went to one neuro six years ago when all this started. then last year when it got worse i was refered to someone else in his practice (good old HMOs). he refered me to a neuromusc. who ignored me, which led me back to my pcp to get a referal for a bx. still waiting to hear. hang in there and i will too. 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? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 a, i went to one neuro six years ago when all this started. then last year when it got worse i was refered to someone else in his practice (good old HMOs). he refered me to a neuromusc. who ignored me, which led me back to my pcp to get a referal for a bx. still waiting to hear. hang in there and i will too. 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? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2005 Report Share Posted June 4, 2005 When I was still able to make it to make desk and was working it was sort of comical (in a way) every time I would start to leave my workstation the girls that worked on both sides of me immediately hit the floor and out into the hall as no one ever knew which way my legs were goinf to take me. I might plan to go " south " BUT my brains didn't get that message to my feet and I at time would make a U-turn and be heading " north " . Another " funtime " I experienced was when I was visiting my cousin and his wife at Hollister, MO, we went to a show in Branson and I wasn't using a walking aid at that time but my legs were really a problem. I got up to go to the restroom and as I was going out the aisle and I virtually " set down " on a total strangers lap. I was so humiliated that I just pulled myself up and said to the lady, " excuse me but you're very soft " . I had regained my composure by the time I came back and attempted to explained that (at that time) I was being treated for parkinsons. There was one very consideate girl that sat in the first cubicle on my aisle that I had to be very careful when I made that turn or I would nearly end up sitting on her. I still have problems about overshooting the corners when I come down the aisle from the bathroom to the bedroom or on into the living room. I don't know if anyone else has experienced this type of problems at anytime or not. If I sit too long then I can hardly stay on my feet for a few minutes. This also is rather humiliating, while I was still able to work and before I quit driving I was so afraid that someone would think I was drunk or ?? so Dr. Baker gave me a note to carry in my purse stating my problems and he told me if I ever get hauled to jail, just call him and he would come get me and explain in person. He is a great person as a well as wonderful/caring doctor, he spent so many, many hours researching me and my condition that I can never thank him enough as I had no idea he was doing that until he called me last December and told me had a correct diagnosis for me. Thanks, Dolores kent thegaffer23@...> wrote: a, i went to one neuro six years ago when all this started. then last year when it got worse i was refered to someone else in his practice (good old HMOs). he refered me to a neuromusc. who ignored me, which led me back to my pcp to get a referal for a bx. still waiting to hear. hang in there and i will too. 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 March 21, 2009 Report Share Posted March 21, 2009 Peggy says she will be here until she's not. So many things to remember about her. Get well soon... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! diagnosis I was diagnosed with IPF ten years ago! I just keep reminding myself that God doesn't let us know our expiration date in advance. I will keep on as I am now and when I am sick (as I am now) I will take it easy. Toodles! Jane UIP/IPF 12/1998 Dalton,.Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Jane i didn't realize your diagnosis was that long ago Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: diagnosisTo: Breathe-Support Date: Saturday, March 21, 2009, 3:37 PM I was diagnosed with IPF ten years ago! I just keep reminding myself that God doesn't let us know our expiration date in advance. I will keep on as I am now and when I am sick (as I am now) I will take it easy. Toodles! Jane UIP/IPF 12/1998 Dalton,.Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Jane this is when i question, do i really need a transplant? Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: diagnosisTo: Breathe-Support Date: Saturday, March 21, 2009, 3:37 PM I was diagnosed with IPF ten years ago! I just keep reminding myself that God doesn't let us know our expiration date in advance. I will keep on as I am now and when I am sick (as I am now) I will take it easy. Toodles! Jane UIP/IPF 12/1998 Dalton,.Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Hi Pink Joyce, I am not crazy about the idea of transplant but I want to keep it as an option just in case. I have had various diagnosis of my IPF and after I took my biopsy slides to Emory, they wanted to call it IPF/UIP (with the honey combing.) At first, I was diagnosed non-specific and I even improved on the prednisone. The chest x-ray at that time looked nearly normal and there were hardly any "white" or scarring on the x-ray. The PFTs that I have at the local pulmodudes' office get better results than the ones at Emory. God is the only one who knows what kind of IPF that I have and He will take care of it.> > Subject: diagnosis> To: Breathe-Support > Date: Saturday, March 21, 2009, 3:37 PM> > > > > > > > I was diagnosed with IPF ten years ago! I just keep reminding myself that God doesn't let us know our expiration date in advance. I will keep on as I am now and when I am sick (as I am now) I will take it easy.> Toodles!> Jane UIP/IPF 12/1998 Dalton,.Georgia aka pianolady_musicgirl> Quote Link to comment Share on other sites More sharing options...
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