Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Went to see the genetic specialist in pitts. on Tuesday. It went well. I really liked the dr and all of his staff!! It was WONDERFUL to actually go to a dr that was interested in all of my symptoms and did not think it was strange. IT was fantastic to go somewhere that they all are so KNOWLEDGEABLE about mito and other diseases. I am so used to seeing neuros and other specialist that say biopsy looks fine and neuro exams are fine so they do not know what is wrong and out the door I go. It was a nice feeling leaving the office thinking that I may get some answers soon and if not answers, some understanding. I was told that BOTH of my open muscle biopsies did NOT actually test for mito..nice, huh?? The respiratory chain was never looked at. Dr will see if any pieces were left and frozen correctly to do the testing on. We were there for 3 hours and constantly with a genetic counselor and nurse and then the doctor came in. They took a thorough family background. When the dr came in he said that he feels there is reason to look into the possiblity of mitochondrial myopathy....especially with my mom's digestive problems and migraines and now mine. Also some other family stuff. 11 tubes of blood, including looking for genetic markers. The rest is just usual testing for mito and usual testing, which some have NEVER been done. Some of the tests might take 3 weeks for results. Next step would be a skin biopsy and then last resort would be a muscle biopsy if needed. Even though he feels mito is a possiblity, he feels that I also have an underlying problem....he even said...this usually occurs with mito. IS A HIGH ANA USUAL IN MITO? couldn't remember. He was very cautious, for which I am glad. I just want to make sure mito is ruled in or out...it has just always hung over me since another Dr. mentioned the possiblity. With mito being such a rare and complicated disease it is just very reassuring that he is so familiar with it and will hopefully either be able to say yes or no once everything is in. He did go further into saying that it may not show now because sometimes it does take awhile to actual show in testing. It has been 10 yrs so I am hopeful that this is the right time with the right doctor to get diagnosed. FEW OTHER THINGS: after being at his office for about 20 mins I began to hurt all over. By the end of the app't I was soooo tired (it was long though) When we got home at 4 pm I went to bed for 2-3 hours, asleep again by 11, up at 7 am, back in bed at noon almost all afternoon. On top of that, IBS flared up. This was the pattern til friday. The office was very warm...felt about 80 and I had a sweater on. It was so warm that I started to even feel my fingers swell. ANY THOUGHTS?? Toprol XL: I have been taking it for about a year for tachycardia and have had no problems with it. Dysmenorrhea: Had this for many years, but also had endometriosis. Had a hysterectomy last year and they found fibroids on top of uterus along with something in the muscle of the uterus. Gynie said the muscle thing was possible when they could not find anything on ultrasounds or testing to explain the pain I was getting. Laurie, good luck with the new med for cramping!!! I truly feel for you. My fingers will occasionally do that, but I can straighten them out...sometimes it does not work, but it doesn't last long and it not too frequent. Very painful though. I hope that you get relief from it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Is this Dr. Vockley? Seems like someone in this group was scheduled to see him in January. Glad you had such a good consult. I always hear good things from people who see him. Barbara > Dr App't > > Went to see the genetic specialist in pitts. on Tuesday. It went > well. I really liked the dr and all of his staff!! It was WONDERFUL > to actually go to a dr that was interested in all of my symptoms and > did not think it was strange. IT was fantastic to go somewhere that > they all are so KNOWLEDGEABLE about mito and other diseases. I am > so used to seeing neuros and other specialist that say biopsy looks > fine and neuro exams are fine so they do not know what is wrong and > out the door I go. It was a nice feeling leaving the office > thinking that I may get some answers soon and if not answers, some > understanding. > > I was told that BOTH of my open muscle biopsies did NOT actually > test for mito..nice, huh?? The respiratory chain was never looked > at. Dr will see if any pieces were left and frozen correctly to do > the testing on. > > We were there for 3 hours and constantly with a genetic counselor > and nurse and then the doctor came in. They took a thorough family > background. When the dr came in he said that he feels there is > reason to look into the possiblity of mitochondrial > myopathy....especially with my mom's digestive problems and > migraines and now mine. Also some other family stuff. > > 11 tubes of blood, including looking for genetic markers. The rest > is just usual testing for mito and usual testing, which some have > NEVER been done. Some of the tests might take 3 weeks for results. > Next step would be a skin biopsy and then last resort would be a > muscle biopsy if needed. > > Even though he feels mito is a possiblity, he feels that I also have > an underlying problem....he even said...this usually occurs with > mito. IS A HIGH ANA USUAL IN MITO? couldn't remember. > > He was very cautious, for which I am glad. I just want to make sure > mito is ruled in or out...it has just always hung over me since > another Dr. mentioned the possiblity. With mito being such a rare > and complicated disease it is just very reassuring that he is so > familiar with it and will hopefully either be able to say yes or no > once everything is in. He did go further into saying that it may > not show now because sometimes it does take awhile to actual show in > testing. It has been 10 yrs so I am hopeful that this is the right > time with the right doctor to get diagnosed. > > FEW OTHER THINGS: > after being at his office for about 20 mins I began to hurt all > over. By the end of the app't I was soooo tired (it was long > though) When we got home at 4 pm I went to bed for 2-3 hours, > asleep again by 11, up at 7 am, back in bed at noon almost all > afternoon. On top of that, IBS flared up. This was the pattern til > friday. The office was very warm...felt about 80 and I had a > sweater on. It was so warm that I started to even feel my fingers > swell. ANY THOUGHTS?? > > Toprol XL: I have been taking it for about a year for tachycardia > and have had no problems with it. > > Dysmenorrhea: Had this for many years, but also had endometriosis. > Had a hysterectomy last year and they found fibroids on top of > uterus along with something in the muscle of the uterus. Gynie said > the muscle thing was possible when they could not find anything on > ultrasounds or testing to explain the pain I was getting. > > Laurie, good luck with the new med for cramping!!! I truly feel for > you. My fingers will occasionally do that, but I can straighten > them out...sometimes it does not work, but it doesn't last long and > it not too frequent. Very painful though. I hope that you get > relief from it. > > > > > > > > > > > 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 January 7, 2006 Report Share Posted January 7, 2006 I am so glad you found a doc who is helping you get answers - what a find. Thanks for the warm wishes. I appreciate that. As for feeling bad, you were experiencing lots of stressors - heat, trip there, on edge trying to think of everything. Just let yourself sleep and you should start feeling better. It is so important to listen to our bodies and then comes the hard part - doiing what our bodies are telling us. laurie > Went to see the genetic specialist in pitts. on Tuesday. It went > well. I really liked the dr and all of his staff!! It was WONDERFUL > to actually go to a dr that was interested in all of my symptoms and > did not think it was strange. IT was fantastic to go somewhere that > they all are so KNOWLEDGEABLE about mito and other diseases. I am > so used to seeing neuros and other specialist that say biopsy looks > fine and neuro exams are fine so they do not know what is wrong and > out the door I go. It was a nice feeling leaving the office > thinking that I may get some answers soon and if not answers, some > understanding. > > I was told that BOTH of my open muscle biopsies did NOT actually > test for mito..nice, huh?? The respiratory chain was never looked > at. Dr will see if any pieces were left and frozen correctly to do > the testing on. > > We were there for 3 hours and constantly with a genetic counselor > and nurse and then the doctor came in. They took a thorough family > background. When the dr came in he said that he feels there is > reason to look into the possiblity of mitochondrial > myopathy....especially with my mom's digestive problems and > migraines and now mine. Also some other family stuff. > > 11 tubes of blood, including looking for genetic markers. The rest > is just usual testing for mito and usual testing, which some have > NEVER been done. Some of the tests might take 3 weeks for results. > Next step would be a skin biopsy and then last resort would be a > muscle biopsy if needed. > > Even though he feels mito is a possiblity, he feels that I also have > an underlying problem....he even said...this usually occurs with > mito. IS A HIGH ANA USUAL IN MITO? couldn't remember. > > He was very cautious, for which I am glad. I just want to make sure > mito is ruled in or out...it has just always hung over me since > another Dr. mentioned the possiblity. With mito being such a rare > and complicated disease it is just very reassuring that he is so > familiar with it and will hopefully either be able to say yes or no > once everything is in. He did go further into saying that it may > not show now because sometimes it does take awhile to actual show in > testing. It has been 10 yrs so I am hopeful that this is the right > time with the right doctor to get diagnosed. > > FEW OTHER THINGS: > after being at his office for about 20 mins I began to hurt all > over. By the end of the app't I was soooo tired (it was long > though) When we got home at 4 pm I went to bed for 2-3 hours, > asleep again by 11, up at 7 am, back in bed at noon almost all > afternoon. On top of that, IBS flared up. This was the pattern til > friday. The office was very warm...felt about 80 and I had a > sweater on. It was so warm that I started to even feel my fingers > swell. ANY THOUGHTS?? > > Toprol XL: I have been taking it for about a year for tachycardia > and have had no problems with it. > > Dysmenorrhea: Had this for many years, but also had endometriosis. > Had a hysterectomy last year and they found fibroids on top of > uterus along with something in the muscle of the uterus. Gynie said > the muscle thing was possible when they could not find anything on > ultrasounds or testing to explain the pain I was getting. > > Laurie, good luck with the new med for cramping!!! I truly feel for > you. My fingers will occasionally do that, but I can straighten > them out...sometimes it does not work, but it doesn't last long and > it not too frequent. Very painful though. I hope that you get > relief from it. > > > > > > > > > > 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 January 8, 2006 Report Share Posted January 8, 2006 Hi , I'm so glad you found a doctor who is knowledgable. What a huge difference it makes! Regarding your comments about your hysterectomy, do you remember what it was they found in the uterine muscle? I would have thought the endo alone would have explained any pelvic pain you had but apparently there were other causes, too. I've had lifelong dysmenorrhea which has become even more exacerbated recently so I'm trying to figure out what to do. (I don't have endo). Thanks, Shayna > > Went to see the genetic specialist in pitts. on Tuesday. It went > well. I really liked the dr and all of his staff!! It was WONDERFUL > to actually go to a dr that was interested in all of my symptoms and > did not think it was strange. IT was fantastic to go somewhere that > they all are so KNOWLEDGEABLE about mito and other diseases. I am > so used to seeing neuros and other specialist that say biopsy looks > fine and neuro exams are fine so they do not know what is wrong and > out the door I go. It was a nice feeling leaving the office > thinking that I may get some answers soon and if not answers, some > understanding. > > I was told that BOTH of my open muscle biopsies did NOT actually > test for mito..nice, huh?? The respiratory chain was never looked > at. Dr will see if any pieces were left and frozen correctly to do > the testing on. > > We were there for 3 hours and constantly with a genetic counselor > and nurse and then the doctor came in. They took a thorough family > background. When the dr came in he said that he feels there is > reason to look into the possiblity of mitochondrial > myopathy....especially with my mom's digestive problems and > migraines and now mine. Also some other family stuff. > > 11 tubes of blood, including looking for genetic markers. The rest > is just usual testing for mito and usual testing, which some have > NEVER been done. Some of the tests might take 3 weeks for results. > Next step would be a skin biopsy and then last resort would be a > muscle biopsy if needed. > > Even though he feels mito is a possiblity, he feels that I also have > an underlying problem....he even said...this usually occurs with > mito. IS A HIGH ANA USUAL IN MITO? couldn't remember. > > He was very cautious, for which I am glad. I just want to make sure > mito is ruled in or out...it has just always hung over me since > another Dr. mentioned the possiblity. With mito being such a rare > and complicated disease it is just very reassuring that he is so > familiar with it and will hopefully either be able to say yes or no > once everything is in. He did go further into saying that it may > not show now because sometimes it does take awhile to actual show in > testing. It has been 10 yrs so I am hopeful that this is the right > time with the right doctor to get diagnosed. > > FEW OTHER THINGS: > after being at his office for about 20 mins I began to hurt all > over. By the end of the app't I was soooo tired (it was long > though) When we got home at 4 pm I went to bed for 2-3 hours, > asleep again by 11, up at 7 am, back in bed at noon almost all > afternoon. On top of that, IBS flared up. This was the pattern til > friday. The office was very warm...felt about 80 and I had a > sweater on. It was so warm that I started to even feel my fingers > swell. ANY THOUGHTS?? > > Toprol XL: I have been taking it for about a year for tachycardia > and have had no problems with it. > > Dysmenorrhea: Had this for many years, but also had endometriosis. > Had a hysterectomy last year and they found fibroids on top of > uterus along with something in the muscle of the uterus. Gynie said > the muscle thing was possible when they could not find anything on > ultrasounds or testing to explain the pain I was getting. > > Laurie, good luck with the new med for cramping!!! I truly feel for > you. My fingers will occasionally do that, but I can straighten > them out...sometimes it does not work, but it doesn't last long and > it not too frequent. Very painful though. I hope that you get > relief from it. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Shayna, I will find out. I myself have been curious of the correct name of it. Have you had any ultrasounds done? There is also another test that can be done in the dr's office to check for fibroids. Have you heard anything on your biopsy yet? > > Hi , > I'm so glad you found a doctor who is knowledgable. What a huge > difference it makes! > > Regarding your comments about your hysterectomy, do you remember what > it was they found in the uterine muscle? I would have thought the > endo alone would have explained any pelvic pain you had but apparently > there were other causes, too. I've had lifelong dysmenorrhea which > has become even more exacerbated recently so I'm trying to figure out > what to do. (I don't have endo). > > Thanks, > Shayna > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 , Thanks for checking up on the name of it. I haven't had any ultrasounds recently but I suspect I'll be getting one in February after my gyn appt. Last time I had an ultrasound was 2000. It showed nothing. But, believing that I had endo, they did diagnostic surgery. No endo was found, but I had two benign pelvic tumors stuck in a tight place. Perhaps they were infected, too, because I had had a low grade fever for months that went away as soon as the tumors were removed. The tumors and dysmenorrhea were separate, but exacerbating, issues I believe. I've had dysmenorrhea since my first period (by then I had neuromuscular symptoms for 4 years). I didn't have tumors then. But the dysmenorrhea became much more extreme in the late '90's due to the tumors that developed then. Since then, I've been on continual dose BC (so I only get my period 4 times/year). This greatly reduced the cramps so that they were bearable. However, in the last year, the cramps have radically increased--which I've heard is not supposed to happen on continuous dose. Also, I get a lot more intermittent spotting. So I see the gyn again in early February. It's possible I have another tumor; but then again, there are many other possibilities, too, which is why I'm curious what your muscle thing was. Another factor is that I recently saw a list of meds that people with mito shouldn't take--and the hormones (BC) I'm on was on that list. When I see my neuro in a couple of weeks I'll ask about that. If I have to go off the BC, I don't know what we'll do about the dysmenorrhea. Thank you for asking about the biopsy. I will get the results on January 26. I'm nervous about it!! Take care, Shayna > > > > Hi , > > I'm so glad you found a doctor who is knowledgable. What a huge > > difference it makes! > > > > Regarding your comments about your hysterectomy, do you remember > what > > it was they found in the uterine muscle? I would have thought the > > endo alone would have explained any pelvic pain you had but > apparently > > there were other causes, too. I've had lifelong dysmenorrhea which > > has become even more exacerbated recently so I'm trying to figure > out > > what to do. (I don't have endo). > > > > Thanks, > > Shayna > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 , I also have a high ANA but my dr's don't think it is related. it has been passed off as a result of my hashimoto's and vitiligo. I did have testing for lupus but all was negative except the ANA. But I am not so sure there isn't some kind of autoimmune response with mito. larual2002 larual2002@...> wrote: Went to see the genetic specialist in pitts. on Tuesday. It went well. I really liked the dr and all of his staff!! It was WONDERFUL to actually go to a dr that was interested in all of my symptoms and did not think it was strange. IT was fantastic to go somewhere that they all are so KNOWLEDGEABLE about mito and other diseases. I am so used to seeing neuros and other specialist that say biopsy looks fine and neuro exams are fine so they do not know what is wrong and out the door I go. It was a nice feeling leaving the office thinking that I may get some answers soon and if not answers, some understanding. I was told that BOTH of my open muscle biopsies did NOT actually test for mito..nice, huh?? The respiratory chain was never looked at. Dr will see if any pieces were left and frozen correctly to do the testing on. We were there for 3 hours and constantly with a genetic counselor and nurse and then the doctor came in. They took a thorough family background. When the dr came in he said that he feels there is reason to look into the possiblity of mitochondrial myopathy....especially with my mom's digestive problems and migraines and now mine. Also some other family stuff. 11 tubes of blood, including looking for genetic markers. The rest is just usual testing for mito and usual testing, which some have NEVER been done. Some of the tests might take 3 weeks for results. Next step would be a skin biopsy and then last resort would be a muscle biopsy if needed. Even though he feels mito is a possiblity, he feels that I also have an underlying problem....he even said...this usually occurs with mito. IS A HIGH ANA USUAL IN MITO? couldn't remember. He was very cautious, for which I am glad. I just want to make sure mito is ruled in or out...it has just always hung over me since another Dr. mentioned the possiblity. With mito being such a rare and complicated disease it is just very reassuring that he is so familiar with it and will hopefully either be able to say yes or no once everything is in. He did go further into saying that it may not show now because sometimes it does take awhile to actual show in testing. It has been 10 yrs so I am hopeful that this is the right time with the right doctor to get diagnosed. FEW OTHER THINGS: after being at his office for about 20 mins I began to hurt all over. By the end of the app't I was soooo tired (it was long though) When we got home at 4 pm I went to bed for 2-3 hours, asleep again by 11, up at 7 am, back in bed at noon almost all afternoon. On top of that, IBS flared up. This was the pattern til friday. The office was very warm...felt about 80 and I had a sweater on. It was so warm that I started to even feel my fingers swell. ANY THOUGHTS?? Toprol XL: I have been taking it for about a year for tachycardia and have had no problems with it. Dysmenorrhea: Had this for many years, but also had endometriosis. Had a hysterectomy last year and they found fibroids on top of uterus along with something in the muscle of the uterus. Gynie said the muscle thing was possible when they could not find anything on ultrasounds or testing to explain the pain I was getting. Laurie, good luck with the new med for cramping!!! I truly feel for you. My fingers will occasionally do that, but I can straighten them out...sometimes it does not work, but it doesn't last long and it not too frequent. Very painful though. I hope that you get relief from it. 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 January 9, 2006 Report Share Posted January 9, 2006 My gyn doc found my fibroids doing ultrasound with a vaginal probe as opposed to the regular abdomal way, which showed nothing. shaynapearl wrote: >, >Thanks for checking up on the name of it. I haven't had any >ultrasounds recently but I suspect I'll be getting one in February >after my gyn appt. Last time I had an ultrasound was 2000. It showed >nothing. But, believing that I had endo, they did diagnostic surgery. > No endo was found, but I had two benign pelvic tumors stuck in a >tight place. Perhaps they were infected, too, because I had had a low >grade fever for months that went away as soon as the tumors were removed. > >The tumors and dysmenorrhea were separate, but exacerbating, issues I >believe. I've had dysmenorrhea since my first period (by then I had >neuromuscular symptoms for 4 years). I didn't have tumors then. But >the dysmenorrhea became much more extreme in the late '90's due to the >tumors that developed then. > >Since then, I've been on continual dose BC (so I only get my period 4 >times/year). This greatly reduced the cramps so that they were >bearable. However, in the last year, the cramps have radically >increased--which I've heard is not supposed to happen on continuous >dose. Also, I get a lot more intermittent spotting. So I see the gyn >again in early February. It's possible I have another tumor; but then >again, there are many other possibilities, too, which is why I'm >curious what your muscle thing was. > >Another factor is that I recently saw a list of meds that people with >mito shouldn't take--and the hormones (BC) I'm on was on that list. >When I see my neuro in a couple of weeks I'll ask about that. If I >have to go off the BC, I don't know what we'll do about the dysmenorrhea. > >Thank you for asking about the biopsy. I will get the results on >January 26. I'm nervous about it!! > >Take care, >Shayna > > >> >> >>>Hi , >>>I'm so glad you found a doctor who is knowledgable. What a huge >>>difference it makes! >>> >>>Regarding your comments about your hysterectomy, do you remember >>> >>> >>what >> >> >>>it was they found in the uterine muscle? I would have thought the >>>endo alone would have explained any pelvic pain you had but >>> >>> >>apparently >> >> >>>there were other causes, too. I've had lifelong dysmenorrhea which >>>has become even more exacerbated recently so I'm trying to figure >>> >>> >>out >> >> >>>what to do. (I don't have endo). >>> >>>Thanks, >>>Shayna >>> >>> >>> >>> > > > > > > >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...
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