Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 > I was told I have 10 of the 14 points, or whatever, that I have > fibromyalgia too (correct me if I'm confusing this). Is it > fibromyalgia, or the same symptoms from mito? Or are fibromyalgia > cases really due to mito issue? You might be interested in knowing that GD Vladutiu has screened a sizeable number of patients with fibromyalgia and chronic fatigue syndrome for mito and other metabolic disorders such as myoadenylate deaminase deficiency, CPT def, McArdle's etc. I have seen her data but can't put my hands on it at the moment. However, I do know that they found a small percentage of these fibro and CFS patients in reality had a metabolic disorder. The most common finding was MADD, which is not surprising since one of five are carriers in the general population and one in 20 have it. I should add that MADD is somewhat controversial in that some doctors believe it is a benign condition and does not cause symptoms. But for some, clearly MADD has an associated myopathy. Here is one abstract from 1992 where the fibro confusion was acknowledged. I've seen other similar abstracts as well. Presse Med. 1992 Jun 6;21(21):974-8. [silent exercise-induced enzymatic myopathies at rest in adults. A cause of confusion with fibromyalgia] Dupond JL, de Wazieres B, Monnier G, Closs F, Desmurs H. Service de Medecine interne, Hopital Jean-Minjoz, CHR, Besancon. Exercise-induced enzymatic myopathies include carnitine palmityl transferase deficiency and, among muscular glycogenoses, Mac Ardle's and Tarui diseases. These diseases are usually recognized when exercise-induced myalgias, myoglobinuria and raised creatinine kinase (CK) levels are present. However, myoglobinuria may be absent in 10 to 50 percent of the cases, and CK levels are often normal at rest; thus, the diagnosis is often delayed for several years, with a risk of acute renal failure in 10 to 30 percent of the patients. We report 6 cases of exercise-induced enzymatic myopathies with normal CK levels and with electromyographic studies at rest. The main clinical features of these cases and those of similar conditions reported in the literature are male sex, onset of the disease before the age of 15 years, episodes of severe exercise-induced myalgias, cramps and muscle weakness and myogenic hyperuricaemia at rest in muscular glycogenosis. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Interesting, thank you Barbara. The person who told me I have fibromyalgia was an integrative medicine physician, so he also told me I had about a zillion other things wrong with me as well. I have a bit of the opposite though - heavy exercise seems to be good for me, and light exercise is the pits. As you said previously, maybe that's a carb metablism issue vs. a fat metabolism issue. Take care, RH > > > I was told I have 10 of the 14 points, or whatever, that I have > > fibromyalgia too (correct me if I'm confusing this). Is it > > fibromyalgia, or the same symptoms from mito? Or are fibromyalgia > > cases really due to mito issue? > > You might be interested in knowing that GD Vladutiu has screened a sizeable > number of patients with fibromyalgia and chronic fatigue syndrome for mito > and other metabolic disorders such as myoadenylate deaminase deficiency, CPT > def, McArdle's etc. I have seen her data but can't put my hands on it at the > moment. However, I do know that they found a small percentage of these fibro > and CFS patients in reality had a metabolic disorder. The most common > finding was MADD, which is not surprising since one of five are carriers in > the general population and one in 20 have it. I should add that MADD is > somewhat controversial in that some doctors believe it is a benign condition > and does not cause symptoms. But for some, clearly MADD has an associated > myopathy. > > Here is one abstract from 1992 where the fibro confusion was acknowledged. > I've seen other similar abstracts as well. > > Presse Med. 1992 Jun 6;21(21):974-8. > [silent exercise-induced enzymatic myopathies at rest in adults. A cause of > confusion with fibromyalgia] > > Dupond JL, de Wazieres B, Monnier G, Closs F, Desmurs H. > Service de Medecine interne, Hopital Jean-Minjoz, CHR, Besancon. > > Exercise-induced enzymatic myopathies include carnitine palmityl transferase > deficiency and, among muscular glycogenoses, Mac Ardle's and Tarui diseases. > These diseases are usually recognized when exercise-induced myalgias, > myoglobinuria and raised creatinine kinase (CK) levels are present. However, > myoglobinuria may be absent in 10 to 50 percent of the cases, and CK levels > are often normal at rest; thus, the diagnosis is often delayed for several > years, with a risk of acute renal failure in 10 to 30 percent of the > patients. We report 6 cases of exercise-induced enzymatic myopathies with > normal CK levels and with electromyographic studies at rest. The main > clinical features of these cases and those of similar conditions reported in > the literature are male sex, onset of the disease before the age of 15 > years, episodes of severe exercise-induced myalgias, cramps and muscle > weakness and myogenic hyperuricaemia at rest in muscular glycogenosis. > > Barbara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 RH, (or others who can answer this), Do you find that after the heavy exercise that you have a crash? For me, it seems that I can do the heavy stuff, and somehow, it's easier to do it, but afterwards I crash for about 3 days. I'm talking about things such as housecleaning, going on a major cleaning spree, or maybe just overdoing it in my ADL's for a couple of days. If I try to pace myself, I tire pretty quickly, it seems, now that you've brought this point up. I always thought this trait was part of my " All or nothing " outlook from the bipolar disorder I have. It could be, but I wonder if it's more to do with the energy metabolism, rather than the manic phase of the bipolar illness. Take care, Cin Re: Fibro/mito Interesting, thank you Barbara. The person who told me I have fibromyalgia was an integrative medicine physician, so he also told me I had about a zillion other things wrong with me as well. I have a bit of the opposite though - heavy exercise seems to be good for me, and light exercise is the pits. As you said previously, maybe that's a carb metablism issue vs. a fat metabolism issue. Take care, RH > > > I was told I have 10 of the 14 points, or whatever, that I have > > fibromyalgia too (correct me if I'm confusing this). Is it > > fibromyalgia, or the same symptoms from mito? Or are fibromyalgia > > cases really due to mito issue? > > You might be interested in knowing that GD Vladutiu has screened a sizeable > number of patients with fibromyalgia and chronic fatigue syndrome for mito > and other metabolic disorders such as myoadenylate deaminase deficiency, CPT > def, McArdle's etc. I have seen her data but can't put my hands on it at the > moment. However, I do know that they found a small percentage of these fibro > and CFS patients in reality had a metabolic disorder. The most common > finding was MADD, which is not surprising since one of five are carriers in > the general population and one in 20 have it. I should add that MADD is > somewhat controversial in that some doctors believe it is a benign condition > and does not cause symptoms. But for some, clearly MADD has an associated > myopathy. > > Here is one abstract from 1992 where the fibro confusion was acknowledged. > I've seen other similar abstracts as well. > > Presse Med. 1992 Jun 6;21(21):974-8. > [silent exercise-induced enzymatic myopathies at rest in adults. A cause of > confusion with fibromyalgia] > > Dupond JL, de Wazieres B, Monnier G, Closs F, Desmurs H. > Service de Medecine interne, Hopital Jean-Minjoz, CHR, Besancon. > > Exercise-induced enzymatic myopathies include carnitine palmityl transferase > deficiency and, among muscular glycogenoses, Mac Ardle's and Tarui diseases. > These diseases are usually recognized when exercise-induced myalgias, > myoglobinuria and raised creatinine kinase (CK) levels are present. However, > myoglobinuria may be absent in 10 to 50 percent of the cases, and CK levels > are often normal at rest; thus, the diagnosis is often delayed for several > years, with a risk of acute renal failure in 10 to 30 percent of the > patients. We report 6 cases of exercise-induced enzymatic myopathies with > normal CK levels and with electromyographic studies at rest. The main > clinical features of these cases and those of similar conditions reported in > the literature are male sex, onset of the disease before the age of 15 > years, episodes of severe exercise-induced myalgias, cramps and muscle > weakness and myogenic hyperuricaemia at rest in muscular glycogenosis. > > Barbara > 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 November 1, 2005 Report Share Posted November 1, 2005 > > > I was told I have 10 of the 14 points, or whatever, that I have > > fibromyalgia too (correct me if I'm confusing this). Is it > > fibromyalgia, or the same symptoms from mito? Or are fibromyalgia > > cases really due to mito issue? > > You might be interested in knowing that GD Vladutiu has screened a sizeable > number of patients with fibromyalgia and chronic fatigue syndrome for mito > and other metabolic disorders such as myoadenylate deaminase deficiency, CPT > def, McArdle's etc. I have seen her data but can't put my hands on it at the > moment. However, I do know that they found a small percentage of these fibro > and CFS patients in reality had a metabolic disorder. The most common > finding was MADD, which is not surprising since one of five are carriers in > the general population and one in 20 have it. I should add that MADD is > somewhat controversial in that some doctors believe it is a benign condition > and does not cause symptoms. But for some, clearly MADD has an associated > myopathy. > > Here is one abstract from 1992 where the fibro confusion was acknowledged. > I've seen other similar abstracts as well. > > Presse Med. 1992 Jun 6;21(21):974-8. > [silent exercise-induced enzymatic myopathies at rest in adults. A cause of > confusion with fibromyalgia] > > Dupond JL, de Wazieres B, Monnier G, Closs F, Desmurs H. > Service de Medecine interne, Hopital Jean-Minjoz, CHR, Besancon. > > Exercise-induced enzymatic myopathies include carnitine palmityl transferase > deficiency and, among muscular glycogenoses, Mac Ardle's and Tarui diseases. > These diseases are usually recognized when exercise-induced myalgias, > myoglobinuria and raised creatinine kinase (CK) levels are present. However, > myoglobinuria may be absent in 10 to 50 percent of the cases, and CK levels > are often normal at rest; thus, the diagnosis is often delayed for several > years, with a risk of acute renal failure in 10 to 30 percent of the > patients. We report 6 cases of exercise-induced enzymatic myopathies with > normal CK levels and with electromyographic studies at rest. The main > clinical features of these cases and those of similar conditions reported in > the literature are male sex, onset of the disease before the age of 15 > years, episodes of severe exercise-induced myalgias, cramps and muscle > weakness and myogenic hyperuricaemia at rest in muscular glycogenosis. > > Barbara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 > > > I was told I have 10 of the 14 points, or whatever, that I have > > fibromyalgia too (correct me if I'm confusing this). Is it > > fibromyalgia, or the same symptoms from mito? Or are fibromyalgia > > cases really due to mito issue? > > You might be interested in knowing that GD Vladutiu has screened a sizeable > number of patients with fibromyalgia and chronic fatigue syndrome for mito > and other metabolic disorders such as myoadenylate deaminase deficiency, CPT > def, McArdle's etc. I have seen her data but can't put my hands on it at the > moment. However, I do know that they found a small percentage of these fibro > and CFS patients in reality had a metabolic disorder. The most common > finding was MADD, which is not surprising since one of five are carriers in > the general population and one in 20 have it. I should add that MADD is > somewhat controversial in that some doctors believe it is a benign condition > and does not cause symptoms. But for some, clearly MADD has an associated > myopathy. > > Here is one abstract from 1992 where the fibro confusion was acknowledged. > I've seen other similar abstracts as well. > > Presse Med. 1992 Jun 6;21(21):974-8. > [silent exercise-induced enzymatic myopathies at rest in adults. A cause of > confusion with fibromyalgia] > > Dupond JL, de Wazieres B, Monnier G, Closs F, Desmurs H. > Service de Medecine interne, Hopital Jean-Minjoz, CHR, Besancon. > > Exercise-induced enzymatic myopathies include carnitine palmityl transferase > deficiency and, among muscular glycogenoses, Mac Ardle's and Tarui diseases. > These diseases are usually recognized when exercise-induced myalgias, > myoglobinuria and raised creatinine kinase (CK) levels are present. However, > myoglobinuria may be absent in 10 to 50 percent of the cases, and CK levels > are often normal at rest; thus, the diagnosis is often delayed for several > years, with a risk of acute renal failure in 10 to 30 percent of the > patients. We report 6 cases of exercise-induced enzymatic myopathies with > normal CK levels and with electromyographic studies at rest. The main > clinical features of these cases and those of similar conditions reported in > the literature are male sex, onset of the disease before the age of 15 > years, episodes of severe exercise-induced myalgias, cramps and muscle > weakness and myogenic hyperuricaemia at rest in muscular glycogenosis. > > Barbara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Thanks Barbara, I find this very interesting also. I was diagnosed with fibro and my metabolic doc hasn't said whether or not that diagnosis still stands. What he says is that my CoQ10 deficiency may be responsible for my muscle pain. I also have elevated actylcarnitines which indicate a possible MADD (FOD). I thought this was rare (1 out of every 100,000 in population). Actually, everything I've read has been contradictory, so I'm pretty confused as to how common MADD is in the adult population. Maggie -- In , " Barbara Seaman " wrote: > > > I was told I have 10 of the 14 points, or whatever, that I have > > fibromyalgia too (correct me if I'm confusing this). Is it > > fibromyalgia, or the same symptoms from mito? Or are fibromyalgia > > cases really due to mito issue? > > You might be interested in knowing that GD Vladutiu has screened a sizeable > number of patients with fibromyalgia and chronic fatigue syndrome for mito > and other metabolic disorders such as myoadenylate deaminase deficiency, CPT > def, McArdle's etc. I have seen her data but can't put my hands on it at the > moment. However, I do know that they found a small percentage of these fibro > and CFS patients in reality had a metabolic disorder. The most common > finding was MADD, which is not surprising since one of five are carriers in > the general population and one in 20 have it. I should add that MADD is > somewhat controversial in that some doctors believe it is a benign condition > and does not cause symptoms. But for some, clearly MADD has an associated > myopathy. > > Here is one abstract from 1992 where the fibro confusion was acknowledged. > I've seen other similar abstracts as well. > > Presse Med. 1992 Jun 6;21(21):974-8. > [silent exercise-induced enzymatic myopathies at rest in adults. A cause of > confusion with fibromyalgia] > > Dupond JL, de Wazieres B, Monnier G, Closs F, Desmurs H. > Service de Medecine interne, Hopital Jean-Minjoz, CHR, Besancon. > > Exercise-induced enzymatic myopathies include carnitine palmityl transferase > deficiency and, among muscular glycogenoses, Mac Ardle's and Tarui diseases. > These diseases are usually recognized when exercise-induced myalgias, > myoglobinuria and raised creatinine kinase (CK) levels are present. However, > myoglobinuria may be absent in 10 to 50 percent of the cases, and CK levels > are often normal at rest; thus, the diagnosis is often delayed for several > years, with a risk of acute renal failure in 10 to 30 percent of the > patients. We report 6 cases of exercise-induced enzymatic myopathies with > normal CK levels and with electromyographic studies at rest. The main > clinical features of these cases and those of similar conditions reported in > the literature are male sex, onset of the disease before the age of 15 > years, episodes of severe exercise-induced myalgias, cramps and muscle > weakness and myogenic hyperuricaemia at rest in muscular glycogenosis. > > Barbara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 > > RH, (or others who can answer this), > Do you find that after the heavy exercise that you have a crash? No, it is the opposite for me - I get an improvement in symptoms for about a day after an hour or more of heavy exercise. > For me, it seems that I can do the heavy stuff, and somehow, it's > easier to do it, but afterwards I crash for about 3 days. I'm > talking about things such as housecleaning, going on a major > cleaning spree, or maybe just overdoing it in my ADL's for a couple > of days. If I try to pace myself, I tire pretty quickly, it seems, > now that you've brought this point up. I always thought this trait > was part of my " All or nothing " outlook from the bipolar disorder I > have. It could be, but I wonder if it's more to do with the energy > metabolism, rather than the manic phase of the bipolar illness. I'm thinking it is more likely mito. Remember, I do well with *heavy* exercise, that is, when my heart rate goes up to over 120 bpm and stays there. Although heavy housework is strenuous, I find it unlikely to elevate the heart rate sufficiently for me to tolerate. I cannot vacuum for very long, so use a small portable vacuum frequently, often sitting on the floor. I also use a broom instead of a vacuum. I thought I was hallucinating that I can't tolerate light exercise, or any prolonged activity that doesn't increase the heart rate, but it does make some sense, especially since I do MUCH better with sports and really strenuous exercise. Another example is that " wrestling " my 2-year-old tires me quickly, but as I mentioned, I can play sports for an hour or more, even a tournament with 3 hours of games with breaks in between (people don't look at me kindly when I use my placard and play sports, but the effort of carrying my equipment tires me out, so I need to reduce the amount of walking I do). So maybe it isn't your bipolar disorder? Maybe you don't have a bipolar disorder, just a metabolic disorder that presents that way? Just a thought, I'm not a medical doctor, but have been there with the psych diagnoses... Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 *Somebody* has to have rare diseases, or they wouldn't exist at all. It is also hard to dx these illnesses, so they may not be as rare as they think... If there are 300 million people in the U.S., one out of 100,000 would be 3,000 people with the illness. Take care, RH > > > > > I was told I have 10 of the 14 points, or whatever, that I have > > > fibromyalgia too (correct me if I'm confusing this). Is it > > > fibromyalgia, or the same symptoms from mito? Or are > fibromyalgia > > > cases really due to mito issue? > > > > You might be interested in knowing that GD Vladutiu has screened a > sizeable > > number of patients with fibromyalgia and chronic fatigue syndrome > for mito > > and other metabolic disorders such as myoadenylate deaminase > deficiency, CPT > > def, McArdle's etc. I have seen her data but can't put my hands on > it at the > > moment. However, I do know that they found a small percentage of > these fibro > > and CFS patients in reality had a metabolic disorder. The most > common > > finding was MADD, which is not surprising since one of five are > carriers in > > the general population and one in 20 have it. I should add that > MADD is > > somewhat controversial in that some doctors believe it is a benign > condition > > and does not cause symptoms. But for some, clearly MADD has an > associated > > myopathy. > > > > Here is one abstract from 1992 where the fibro confusion was > acknowledged. > > I've seen other similar abstracts as well. > > > > Presse Med. 1992 Jun 6;21(21):974-8. > > [silent exercise-induced enzymatic myopathies at rest in adults. A > cause of > > confusion with fibromyalgia] > > > > Dupond JL, de Wazieres B, Monnier G, Closs F, Desmurs H. > > Service de Medecine interne, Hopital Jean-Minjoz, CHR, Besancon. > > > > Exercise-induced enzymatic myopathies include carnitine palmityl > transferase > > deficiency and, among muscular glycogenoses, Mac Ardle's and Tarui > diseases. > > These diseases are usually recognized when exercise-induced > myalgias, > > myoglobinuria and raised creatinine kinase (CK) levels are > present. However, > > myoglobinuria may be absent in 10 to 50 percent of the cases, and > CK levels > > are often normal at rest; thus, the diagnosis is often delayed for > several > > years, with a risk of acute renal failure in 10 to 30 percent of > the > > patients. We report 6 cases of exercise-induced enzymatic > myopathies with > > normal CK levels and with electromyographic studies at rest. The > main > > clinical features of these cases and those of similar conditions > reported in > > the literature are male sex, onset of the disease before the age > of 15 > > years, episodes of severe exercise-induced myalgias, cramps and > muscle > > weakness and myogenic hyperuricaemia at rest in muscular > glycogenosis. > > > > Barbara > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 RH, Thanks for the input. From what I've learned here, and read about Mito, I tend to agree that our family's bipolar disorder is probably connected to the Mito. Even before I knew much about it, when my sis was filling out our family history for the neurology and genetic clinics, (with my help, as I'm the " medically inclined " one in our family), it really hit home as to how many of us were affected with this, and all the other symptoms. And with the neuropathy we all have, I did at that point, even, wonder about a connection of the BP and the Mito. Then, I read on some informative medical sites, that one of the symptoms of Mito can include psychiatric disturbances. There's a Hx of deafness, neuropathy, and bipolar disorder in our family, and all are associated with the nervous system, so it makes sense to me that the same disorder could be affecting all of these other symptoms. I can't do any sports or aerobic type exercises at all. I'd last for probably a minute LOL. I do pool exercises, where I try to jog across the pool, but not to the point that it takes my breath away. It's real slow, gentle exercise, certainly nowhere near aerobic. I can't swim the length of the pool without stopping to catch my breath, and in fact, I've pretty much given up swimming this past year, as I just get too tired. I blamed that on my asthma, even though the asthma itself is really mild. I can ride a bike still, though, but usually ride it for less than a mile and a half. I have three stop signs/traffic lights in that distance, and if I rode it farther, I'd certainly stop and take a break and rest some. *SIGHS* and I remember when my son was in his teens, we used to ride 15 to 25 miles a day, several times a week, sometimes. (He's 27 now, so it's been 12-15 years, and a few pounds ago... OK, MANY pounds ago LOL). But hey, who's looking at what I CAN'T do? There still are a lot of things I CAN do, which I am thankful to be able to do so. But, what I started out to say is, well, I've been telling myself that all these symptoms are because of this, and because of that (the BP, the asthma, etc.), when, in fact, it COULD be all related to the Mito. Of course, we still don't have a positive diagnosis, but I'm pretty well convinced that is what is going on with my family and me. Take care, Cin Re: Fibro/mito > > RH, (or others who can answer this), > Do you find that after the heavy exercise that you have a crash? No, it is the opposite for me - I get an improvement in symptoms for about a day after an hour or more of heavy exercise. > For me, it seems that I can do the heavy stuff, and somehow, it's > easier to do it, but afterwards I crash for about 3 days. I'm > talking about things such as housecleaning, going on a major > cleaning spree, or maybe just overdoing it in my ADL's for a couple > of days. If I try to pace myself, I tire pretty quickly, it seems, > now that you've brought this point up. I always thought this trait > was part of my " All or nothing " outlook from the bipolar disorder I > have. It could be, but I wonder if it's more to do with the energy > metabolism, rather than the manic phase of the bipolar illness. I'm thinking it is more likely mito. Remember, I do well with *heavy* exercise, that is, when my heart rate goes up to over 120 bpm and stays there. Although heavy housework is strenuous, I find it unlikely to elevate the heart rate sufficiently for me to tolerate. I cannot vacuum for very long, so use a small portable vacuum frequently, often sitting on the floor. I also use a broom instead of a vacuum. I thought I was hallucinating that I can't tolerate light exercise, or any prolonged activity that doesn't increase the heart rate, but it does make some sense, especially since I do MUCH better with sports and really strenuous exercise. Another example is that " wrestling " my 2-year-old tires me quickly, but as I mentioned, I can play sports for an hour or more, even a tournament with 3 hours of games with breaks in between (people don't look at me kindly when I use my placard and play sports, but the effort of carrying my equipment tires me out, so I need to reduce the amount of walking I do). So maybe it isn't your bipolar disorder? Maybe you don't have a bipolar disorder, just a metabolic disorder that presents that way? Just a thought, I'm not a medical doctor, but have been there with the psych diagnoses... Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 > Thanks Barbara, > I find this very interesting also. I was diagnosed with fibro and > my metabolic doc hasn't said whether or not that diagnosis still > stands. What he says is that my CoQ10 deficiency may be responsible > for my muscle pain. I also have elevated actylcarnitines which > indicate a possible MADD (FOD). I thought this was rare (1 out of > every 100,000 in population). Actually, everything I've read has > been contradictory, so I'm pretty confused as to how common MADD is > in the adult population. > Maggie Maggie, As I recall, there are a couple of different disorders that use the MAD or MADD acronym which can make it confusing. The one that is common is myoadenylate deaminase deficiency. I just checked Dr. Vladutiu's stats on MADD, however, and I misremembered. One out of every 5 is a carrier, but only one in 50 have the disorder, not one in 20 as I said earlier. Here is the exact quote from her: http://www.spiralnotebook.org/cptplus/index.html " The diagnosis of these complex disorders is not always straightforward. Certain relatively non-invasive tests can be performed before considering muscle biopsy. One test known as the ischemic forearm exercise test measures the production of both lactic acid and ammonia in the blood during exertion. This test helps to rule out triggerable muscle diseases caused by defects in glycogen metabolism, such as McArdle's disease (a deficiency in phosphorylase enzyme activity), and the most common metabolic muscle disease, myoadenylate deaminase deficiency, also known as MADD. " MADD occurs in every 1 in 50 individuals in the general population and every 1 in 5 individuals is a carrier for one mutation in the MAD gene. The symptoms of MADD are similar to those of McArdle's disease and CPT II deficiency, however, not everyone with MADD is symptomatic making it one of the most puzzling disorders of exercise intolerance. " As far as fibro goes, I know quite a few CPT patients who have been told they have fibro AND CPT. The double label comes from doctors who don't believe that CPT can cause chronic symptoms, so any chronic muscle pain they insist on labeling fibromyalgia. I suppose some patients could have both, but how to prove that? Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Ah, yes. I keep forgetting about the " other " MADD. That explains the discrepancy. Sounds pretty strange to me that they don't believe CPT could cause chronic symptoms. Funny thing (well, maybe not so funny) is that I'm seeing more and more theories surfacing regarding the cause of CFS and FMS involving mitochondrial dysfunction. Maggie > > > Maggie, As I recall, there are a couple of different disorders that use the > MAD or MADD acronym which can make it confusing. The one that is common is > myoadenylate deaminase deficiency. > As far as fibro goes, I know quite a few CPT patients who have been told > they have fibro AND CPT. The double label comes from doctors who don't > believe that CPT can cause chronic symptoms, so any chronic muscle pain they > insist on labeling fibromyalgia. I suppose some patients could have both, > but how to prove that? > > Barbara > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.