Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 You're right, a, CPK, ammonia, lactic acid, ketones and carnitine can be normal in mito patients. In some cases, they may elevate during severe episodes for some patients. In others, they may be chronically elevated. It varies a lot. I understand your frustration. Sometimes all the normal test results make the doctors skeptical. Have they done an EMG-electromyogram? That can pick up muscle problems even when the CPK is normal. My CPK is usually normal, but my EMG is not. _____ From: [mailto: ] On Behalf Of onefulloffaith Sent: Friday, April 29, 2005 11:39 AM To: Subject: testing Hello, I had some blood work done yesterday. It took the hospital an hour to figure out how to do it, they had to call my doctor to ask him because they had never seen lab orders like those before, so I am hoping it was done correctly. My doctor emailed me a couple hours later and said all my inital lab results were normal (i did fast)- (CPK-muscle enzymes, ammonia, Lactic acid, serum ketones) and that we are now waiting on the carnitine results which were a send out lab. I thought I read somewhere that lab work can still come back normal and one could still have mito issues. Does anyone know how true this is? I really wanted to have a sleep study done since I think it is my muscle spasms that are waking me up several times a night, and wanted my doctor to have some clinical evidence other than just what I say. Unfortunetly sleep studies are not covered for adults under medicaid. Guess I am feeling frustrated because I know something is wrong with my body, but all my testing comes back normal. Thanks, a 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 April 29, 2005 Report Share Posted April 29, 2005 Hi a, I have been going thru the same frustrations as you and many othe are. My EMG was abnormal as well as a couple of my labs, that was when my neurologist referred me to a hematologist/genetics doctor. He ran more tests and I haven't gotten anything conclusive from him yet? I am finding this is a very long road and since I am 69 I may never know (ha). Dolores Barbara Seaman wheatchild@...> wrote:You're right, a, CPK, ammonia, lactic acid, ketones and carnitine can be normal in mito patients. In some cases, they may elevate during severe episodes for some patients. In others, they may be chronically elevated. It varies a lot. I understand your frustration. Sometimes all the normal test results make the doctors skeptical. Have they done an EMG-electromyogram? That can pick up muscle problems even when the CPK is normal. My CPK is usually normal, but my EMG is not. _____ From: [mailto: ] On Behalf Of onefulloffaith Sent: Friday, April 29, 2005 11:39 AM To: Subject: testing Hello, I had some blood work done yesterday. It took the hospital an hour to figure out how to do it, they had to call my doctor to ask him because they had never seen lab orders like those before, so I am hoping it was done correctly. My doctor emailed me a couple hours later and said all my inital lab results were normal (i did fast)- (CPK-muscle enzymes, ammonia, Lactic acid, serum ketones) and that we are now waiting on the carnitine results which were a send out lab. I thought I read somewhere that lab work can still come back normal and one could still have mito issues. Does anyone know how true this is? I really wanted to have a sleep study done since I think it is my muscle spasms that are waking me up several times a night, and wanted my doctor to have some clinical evidence other than just what I say. Unfortunetly sleep studies are not covered for adults under medicaid. Guess I am feeling frustrated because I know something is wrong with my body, but all my testing comes back normal. Thanks, a 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 April 29, 2005 Report Share Posted April 29, 2005 Hi Barbara, Thank you for the information. I see a neurologist in June, and my doctor mentioned asking him about the EMG. I guess I will have to wait a bit longer. a > You're right, a, CPK, ammonia, lactic acid, ketones and carnitine can > be normal in mito patients. In some cases, they may elevate during severe > episodes for some patients. In others, they may be chronically elevated. It > varies a lot. I understand your frustration. Sometimes all the normal test > results make the doctors skeptical. Have they done an EMG- electromyogram? > That can pick up muscle problems even when the CPK is normal. My CPK is > usually normal, but my EMG is not. > > > > _____ > > From: [mailto: ] On Behalf > Of onefulloffaith > Sent: Friday, April 29, 2005 11:39 AM > To: > Subject: testing > > > > > Hello, > > I had some blood work done yesterday. It took the hospital an hour > to figure out how to do it, they had to call my doctor to ask him > because they had never seen lab orders like those before, so I am > hoping it was done correctly. > > My doctor emailed me a couple hours later and said all my inital lab > results were normal (i did fast)- (CPK-muscle enzymes, ammonia, > Lactic acid, serum ketones) and that we are now waiting on the > carnitine results which were a send out lab. > > I thought I read somewhere that lab work can still come back normal > and one could still have mito issues. Does anyone know how true this > is? > > I really wanted to have a sleep study done since I think it is my > muscle spasms that are waking me up several times a night, and wanted > my doctor to have some clinical evidence other than just what I say. > Unfortunetly sleep studies are not covered for adults under medicaid. > > Guess I am feeling frustrated because I know something is wrong with > my body, but all my testing comes back normal. > > Thanks, > a > > > > > > > > > > > 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 April 29, 2005 Report Share Posted April 29, 2005 Hi Dolores, What do you think of this cold weather? I wish mother nature would make up her mind! thanks for responding, I see a neuro in June and was told to ask about the EMG. Looks like we can walk this road together for awhile, I find company always beats being solitaire! a You're right, a, CPK, ammonia, lactic acid, ketones and carnitine can > be normal in mito patients. In some cases, they may elevate during severe > episodes for some patients. In others, they may be chronically elevated. It > varies a lot. I understand your frustration. Sometimes all the normal test > results make the doctors skeptical. Have they done an EMG- electromyogram? > That can pick up muscle problems even when the CPK is normal. My CPK is > usually normal, but my EMG is not. > > > > _____ > > From: [mailto: ] On Behalf > Of onefulloffaith > Sent: Friday, April 29, 2005 11:39 AM > To: > Subject: testing > > > > > Hello, > > I had some blood work done yesterday. It took the hospital an hour > to figure out how to do it, they had to call my doctor to ask him > because they had never seen lab orders like those before, so I am > hoping it was done correctly. > > My doctor emailed me a couple hours later and said all my inital lab > results were normal (i did fast)- (CPK-muscle enzymes, ammonia, > Lactic acid, serum ketones) and that we are now waiting on the > carnitine results which were a send out lab. > > I thought I read somewhere that lab work can still come back normal > and one could still have mito issues. Does anyone know how true this > is? > > I really wanted to have a sleep study done since I think it is my > muscle spasms that are waking me up several times a night, and wanted > my doctor to have some clinical evidence other than just what I say. > Unfortunetly sleep studies are not covered for adults under medicaid. > > Guess I am feeling frustrated because I know something is wrong with > my body, but all my testing comes back normal. > > Thanks, > a > > > > > > > > > > > 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 April 30, 2005 Report Share Posted April 30, 2005 Most of my lab results lately have been normal - lactate, lactate/pyruvate ratio, ammonia, CPK, yet I have a definite Complex I defect, per fresh muscle biopsy, and symptoms. I spent a long time with normal results for everything, then slowly I got abnormal lactate/pyruvate ratio (low pyruvate) and finally the MR SPECT showed lactate buildup in my brain. The high ammonia values I've had have only been in the last two years, I had 8 years with no noticeable problems from that. Certainly before they thought I had mito I had a lot of normal " regular " tests. Are they continuing to look for MS and other neuromuscular diseases as well? Take care, RH > > Hello, > > I had some blood work done yesterday. It took the hospital an hour > to figure out how to do it, they had to call my doctor to ask him > because they had never seen lab orders like those before, so I am > hoping it was done correctly. > > My doctor emailed me a couple hours later and said all my inital lab > results were normal (i did fast)- (CPK-muscle enzymes, ammonia, > Lactic acid, serum ketones) and that we are now waiting on the > carnitine results which were a send out lab. > > I thought I read somewhere that lab work can still come back normal > and one could still have mito issues. Does anyone know how true this > is? > > I really wanted to have a sleep study done since I think it is my > muscle spasms that are waking me up several times a night, and wanted > my doctor to have some clinical evidence other than just what I say. > Unfortunetly sleep studies are not covered for adults under medicaid. > > Guess I am feeling frustrated because I know something is wrong with > my body, but all my testing comes back normal. > > Thanks, > a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2005 Report Share Posted April 30, 2005 The only " regular " EMG I had was normal - they were looking for signs of myasthenia gravis. I think it was normal because I was in so much pain from the testing, I had a lot of adrenalin to help things work better. So EMG may show something, or may not. I also had a " single-fiber EMG " , which is specific for myasthenia gravis, and that was normal as well. Take care, RH > You're right, a, CPK, ammonia, lactic acid, ketones and carnitine can > be normal in mito patients. In some cases, they may elevate during severe > episodes for some patients. In others, they may be chronically elevated. It > varies a lot. I understand your frustration. Sometimes all the normal test > results make the doctors skeptical. Have they done an EMG- electromyogram? > That can pick up muscle problems even when the CPK is normal. My CPK is > usually normal, but my EMG is not. > > > > _____ > > From: [mailto: ] On Behalf > Of onefulloffaith > Sent: Friday, April 29, 2005 11:39 AM > To: > Subject: testing > > > > > Hello, > > I had some blood work done yesterday. It took the hospital an hour > to figure out how to do it, they had to call my doctor to ask him > because they had never seen lab orders like those before, so I am > hoping it was done correctly. > > My doctor emailed me a couple hours later and said all my inital lab > results were normal (i did fast)- (CPK-muscle enzymes, ammonia, > Lactic acid, serum ketones) and that we are now waiting on the > carnitine results which were a send out lab. > > I thought I read somewhere that lab work can still come back normal > and one could still have mito issues. Does anyone know how true this > is? > > I really wanted to have a sleep study done since I think it is my > muscle spasms that are waking me up several times a night, and wanted > my doctor to have some clinical evidence other than just what I say. > Unfortunetly sleep studies are not covered for adults under medicaid. > > Guess I am feeling frustrated because I know something is wrong with > my body, but all my testing comes back normal. > > Thanks, > a > > > > > > > > > > > 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 April 30, 2005 Report Share Posted April 30, 2005 I think that's why if you can get a good MDA neuro, they might be a bit more familiar with different neuromuscular diseases. My first neurologist was a brain tumor specialist, and he had only ever seen one case of myasthenia gravis (MG), and that was in medical school, MG being much more common than mitochondrial disease. I think some of the doctors don't know how to read the tests, and are afraid to send you to another doctor in the same specialty who may be knowledgeable (like the local doctor I just called). Take care, RH You're right, a, CPK, ammonia, lactic acid, ketones and carnitine can > be normal in mito patients. In some cases, they may elevate during severe > episodes for some patients. In others, they may be chronically elevated. It > varies a lot. I understand your frustration. Sometimes all the normal test > results make the doctors skeptical. Have they done an EMG- electromyogram? > That can pick up muscle problems even when the CPK is normal. My CPK is > usually normal, but my EMG is not. > > > > _____ > > From: [mailto: ] On Behalf > Of onefulloffaith > Sent: Friday, April 29, 2005 11:39 AM > To: > Subject: testing > > > > > Hello, > > I had some blood work done yesterday. It took the hospital an hour > to figure out how to do it, they had to call my doctor to ask him > because they had never seen lab orders like those before, so I am > hoping it was done correctly. > > My doctor emailed me a couple hours later and said all my inital lab > results were normal (i did fast)- (CPK-muscle enzymes, ammonia, > Lactic acid, serum ketones) and that we are now waiting on the > carnitine results which were a send out lab. > > I thought I read somewhere that lab work can still come back normal > and one could still have mito issues. Does anyone know how true this > is? > > I really wanted to have a sleep study done since I think it is my > muscle spasms that are waking me up several times a night, and wanted > my doctor to have some clinical evidence other than just what I say. > Unfortunetly sleep studies are not covered for adults under medicaid. > > Guess I am feeling frustrated because I know something is wrong with > my body, but all my testing comes back normal. > > Thanks, > a > > > > > > > > > > > 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 April 30, 2005 Report Share Posted April 30, 2005 a, I have a diagnosis of mito, through a muscle biopsy,but all of my blood tests come back normal. I don't know why this is, but it does happen. Smiles, a K. On Fri, 29 Apr 2005 16:39:10 -0000 " onefulloffaith " onefulloffaith@...> writes: Hello, I had some blood work done yesterday. It took the hospital an hour to figure out how to do it, they had to call my doctor to ask him because they had never seen lab orders like those before, so I am hoping it was done correctly. My doctor emailed me a couple hours later and said all my inital lab results were normal (i did fast)- (CPK-muscle enzymes, ammonia, Lactic acid, serum ketones) and that we are now waiting on the carnitine results which were a send out lab. I thought I read somewhere that lab work can still come back normal and one could still have mito issues. Does anyone know how true this is? I really wanted to have a sleep study done since I think it is my muscle spasms that are waking me up several times a night, and wanted my doctor to have some clinical evidence other than just what I say. Unfortunetly sleep studies are not covered for adults under medicaid. Guess I am feeling frustrated because I know something is wrong with my body, but all my testing comes back normal. Thanks, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2005 Report Share Posted April 30, 2005 It makes it nice to have someone to stumble and pick yourself up with. Your are right about this weather. I am getting tired of taking my braided rugs out to cover up the small planters that my 48 year old son, got me last spring (he passed away suddenly in August) the seeds are just barely starting to pop thru the soil. It is now 44 in Topeka so I guess I will put my letters on the mailbox and bring the rugs back in hopefully for the last time but as the old saying goes, " if you don't like Kansas weather one day just wait until the next " . Dolores onefulloffaith onefulloffaith@...> wrote: Hi Dolores, What do you think of this cold weather? I wish mother nature would make up her mind! thanks for responding, I see a neuro in June and was told to ask about the EMG. Looks like we can walk this road together for awhile, I find company always beats being solitaire! a You're right, a, CPK, ammonia, lactic acid, ketones and carnitine can > be normal in mito patients. In some cases, they may elevate during severe > episodes for some patients. In others, they may be chronically elevated. It > varies a lot. I understand your frustration. Sometimes all the normal test > results make the doctors skeptical. Have they done an EMG- electromyogram? > That can pick up muscle problems even when the CPK is normal. My CPK is > usually normal, but my EMG is not. > > > > _____ > > From: [mailto: ] On Behalf > Of onefulloffaith > Sent: Friday, April 29, 2005 11:39 AM > To: > Subject: testing > > > > > Hello, > > I had some blood work done yesterday. It took the hospital an hour > to figure out how to do it, they had to call my doctor to ask him > because they had never seen lab orders like those before, so I am > hoping it was done correctly. > > My doctor emailed me a couple hours later and said all my inital lab > results were normal (i did fast)- (CPK-muscle enzymes, ammonia, > Lactic acid, serum ketones) and that we are now waiting on the > carnitine results which were a send out lab. > > I thought I read somewhere that lab work can still come back normal > and one could still have mito issues. Does anyone know how true this > is? > > I really wanted to have a sleep study done since I think it is my > muscle spasms that are waking me up several times a night, and wanted > my doctor to have some clinical evidence other than just what I say. > Unfortunetly sleep studies are not covered for adults under medicaid. > > Guess I am feeling frustrated because I know something is wrong with > my body, but all my testing comes back normal. > > Thanks, > a > > > > > > > > > > > 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 April 30, 2005 Report Share Posted April 30, 2005 The first EMG that was abnormal was following exercise and it determined that it was metabolic. I had had many normal ones before that. They became abnormal without exercise and then back to normal after getting my supplement levels up. The way it was determined to be a metabolic disorder was that they tested my legs and then had me walk up and down stairs (sister was also doing it). After we were exhausted, an EMG was done on our legs and arms. There were abnormalities in both. Since we only exercised out legs and the arms were also abnormal, they know it had to be metabolic. laurie > a, I have a diagnosis of mito, through a muscle biopsy,but all of > my blood tests come back normal. I don't know why this is, but it does > happen. > Smiles, > a K. > On Fri, 29 Apr 2005 16:39:10 -0000 " onefulloffaith " > onefulloffaith@...> writes: > > Hello, > > I had some blood work done yesterday. It took the hospital an hour > to figure out how to do it, they had to call my doctor to ask him > because they had never seen lab orders like those before, so I am > hoping it was done correctly. > > My doctor emailed me a couple hours later and said all my inital lab > results were normal (i did fast)- (CPK-muscle enzymes, ammonia, > Lactic acid, serum ketones) and that we are now waiting on the > carnitine results which were a send out lab. > > I thought I read somewhere that lab work can still come back normal > and one could still have mito issues. Does anyone know how true this > is? > > I really wanted to have a sleep study done since I think it is my > muscle spasms that are waking me up several times a night, and wanted > my doctor to have some clinical evidence other than just what I say. > Unfortunetly sleep studies are not covered for adults under medicaid. > > Guess I am feeling frustrated because I know something is wrong with > my body, but all my testing comes back normal. > > Thanks, > a > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 Someone gave me an article which mentioned SCD and the benefits that many of us see while on the diet. It also mentioned that it would be a good idea to do a DDI urine amino acids test to look for high levels of ammonia due to the increased intake of protein. Has anyone else heard this or done this while on the diet? Here is the link to the article if anyone wants to see. http://www.autismanswer.com/forum/viewtopic.php? t=1386&highlight=high+ammonia+levels+nystatin+probiotics mother of Caden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 , SCD is NOT a high protein diet. SCD restricts the types of carbohydrates, but not the quantity of carbohydrates. The only time the diet is high in protein is during the intro diet, which only lasts a couple of days. If you are feeding a balanced diet, then excess protein intake should not be a problem. Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 , SCD is NOT a high protein diet. SCD restricts the types of carbohydrates, but not the quantity of carbohydrates. The only time the diet is high in protein is during the intro diet, which only lasts a couple of days. If you are feeding a balanced diet, then excess protein intake should not be a problem. Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 , SCD is NOT a high protein diet. SCD restricts the types of carbohydrates, but not the quantity of carbohydrates. The only time the diet is high in protein is during the intro diet, which only lasts a couple of days. If you are feeding a balanced diet, then excess protein intake should not be a problem. Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Jodee, It's really difficult to say what should be done in individual cases. What I would say that if you are not satisfied with the care you are receiving from your pulmonologist than you might give some consideration to switching doctors. I was diagnosed 3 years ago and I get my care now at Duke. I see the pulmo there every 3-6 months depending on how I am doing. I have a full pulmonary function test every time I see him and I have an echocardiogram twice a year. I also see a rheumotologist for my dermatomyositis and obviously have bloodwork and such done on a regular basis for that. If your doctor feels certain of your diagnosis and your stability then he/she may not see the need for extensive testing. If it were me however I would be more comfortable if you had a PFT at least once a year along with an echocardiogram. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, June 6, 2009 12:09:14 PMSubject: Testing I will be seeing my Pulmo. Dr. in a couple of weeks. He does not seem to do any testing on me like I have been reading from all of you. He listens to my lungs and then complains about my weight and that is it. It has been six months since I've seen him. What tests should I be having for someone that has had PF for 7 years and will not have a transplant? Thank you all for your input. Jodee PF, RA, Fibramylagia, CHF, Diabetis, High Chlorostrol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Jodee, It's really difficult to say what should be done in individual cases. What I would say that if you are not satisfied with the care you are receiving from your pulmonologist than you might give some consideration to switching doctors. I was diagnosed 3 years ago and I get my care now at Duke. I see the pulmo there every 3-6 months depending on how I am doing. I have a full pulmonary function test every time I see him and I have an echocardiogram twice a year. I also see a rheumotologist for my dermatomyositis and obviously have bloodwork and such done on a regular basis for that. If your doctor feels certain of your diagnosis and your stability then he/she may not see the need for extensive testing. If it were me however I would be more comfortable if you had a PFT at least once a year along with an echocardiogram. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, June 6, 2009 12:09:14 PMSubject: Testing I will be seeing my Pulmo. Dr. in a couple of weeks. He does not seem to do any testing on me like I have been reading from all of you. He listens to my lungs and then complains about my weight and that is it. It has been six months since I've seen him. What tests should I be having for someone that has had PF for 7 years and will not have a transplant? Thank you all for your input. Jodee PF, RA, Fibramylagia, CHF, Diabetis, High Chlorostrol Quote Link to comment Share on other sites More sharing options...
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