Guest guest Posted December 12, 2004 Report Share Posted December 12, 2004 Dawn I'm so sorry that you have had to go through this with your doctor. I remember the frustration I felt when I was told that my problem was in my head. Keep fighting to get an answer if you want one. It is more important to some folks than others to have the diagnosis. I am glad I finally got some answers. Good luck with the new doctor. laurie > > Reply-To: > Date: Mon, 13 Dec 2004 03:51:24 -0000 > To: > Subject: To Barbara Seaman > > > Hi Barbara, Thank you for posting so much information to the new > member. I am sure you remember about how my electron microscopy > mentioned a possible variation of a CPT dificiency. Since I have > posted this ,I went to see my neurologist. > > My neurologist told me that something metabolic is going on, some > kind of enzyme deficiency, possible CPT. SHe then stated that this > is common among the general population. She did not think there was > enough biopsy left for futhur analysis and felt it would not be > worth looking into any furthur. My symptoms and abnormal gait don't > match. I asked her what she thought my problem was. She said a > variaty of things...fibromyalgia, dysautonomia, some kind of enzyme > deficiency....See this Dr accused me of having a conversion disorder > along with my dysautonomia. I considered this diagnosis, but became > 100% positive she was wrong. I could not convince her to change her > mind. I made a big stink about it and other Drs ordered an EMG and > convinced her to do a muscle biopsy. Her associate was going to take > me as a client,if it was OK with her. Well, she wanted to keep me. I > know she is still convinced that so many of my problems are > psychological. She told me there is nothing else she can do for me, > just take the meds my PCP put me on, but then decided to put me on > the mito cocktail. Sorry this is so long. > > I was so flabergasted after this appointment and felt so relieved to > not be going back to see her again. Now I know she got CPT > deficiency and Madd mixed up. Fortunately I am goig to see Dr > Whiteman a Mayo clinic on Jan 13th. I have heard good things about > him. It still is scarey going to see another Dr. My illnees has > progressed this past year. I feel lousey most of the time with so > many symptoms and my ability to walk is getting less and less.I do > try and stay active as much as possible. I often overdo it to find > myself in the pit again. It takes so little to get there. This can't > be fibro!!! My neurologist just could not understand why I had a > handicap parking sticker and could no longer work as an occupational > therapist. I am finding it hard to walk far on cement without > tripping and falling. > > If Dr Whiteman can not give me an answer, it would just be nice to > have a Dr validate my concerns. It would be so wonderful if this was > psychological, because then I woudl have more of a chance of getting > better. WEll two years of intensive psychotherapy and > antidepressants and my physical symptoms are much worse. Fortunately > my counselor no longer agrees with the conversion disorder diagnosis. > I guess I just needed to vent and felt like tattling on my Dr. > Thanks! > > Dawn 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 December 13, 2004 Report Share Posted December 13, 2004 Hi Dawn, Yes, I do remember the CPT suggestion on your report and wondered what was going on with you. I think you're absolutely right, your doc confused MADD with CPT. Dr. Vladutiu has done at least one study on the incidence of CPT mutations in the general population and it is not common. MADD is. When I was diagnosed with CPT in 1983, I was told there were about 50 cases in the world. Best estimates now run around 300-400 cases. Most experts think it is generally under-diagnosed, and I believe that, given what patients have to go through to get a diagnosis. In our diagnosis survey, 50 CPT patients saw an average of 5 doctors over 8 years before they received an accurate diagnosis. I am glad you are going to Mayo Clinic to see Dr. Whiteman. I don't know any patients who have seen him, but if you have heard good things, that bodes well. Patient grapevine is pretty reliable. And yes, I remember how scary it was to see a new doc when I did not have a diagnosis. Pardon my soap box, but I really feel strongly that the American health care system treats patients with a diagnosis and patients without a diagnosis entirely differently. Women with generalized fatigue and muscle pain especially get blown off, IMO, often lumped into a stereotype. Oh, one of those. I never had anyone tell me it was all in my head, but I got a lot of shrugs. Somehow I would like to convey to these physicians how painful such an experience can be. It takes considerable courage and determination to subject yourself to that over and over. I realize these disorders are extremely complex and difficult to diagnose and that some physicians don't want to deal with such cases. If they would just be honest and say that rather than trivializing the complaints, most patients would accept that point of view and look elsewhere for help. Well, all this to say I am hopeful that Dr. Whiteman will, at a minimum, treat you and your complaints with respect and perhaps even find some clues that lead to answers. Let us know how it turns out. Barbara _____ From: dawnanich Sent: Sunday, December 12, 2004 9:51 PM To: Subject: To Barbara Seaman Hi Barbara, Thank you for posting so much information to the new member. I am sure you remember about how my electron microscopy mentioned a possible variation of a CPT dificiency. Since I have posted this ,I went to see my neurologist. My neurologist told me that something metabolic is going on, some kind of enzyme deficiency, possible CPT. SHe then stated that this is common among the general population. She did not think there was enough biopsy left for futhur analysis and felt it would not be worth looking into any furthur. My symptoms and abnormal gait don't match. I asked her what she thought my problem was. She said a variaty of things...fibromyalgia, dysautonomia, some kind of enzyme deficiency....See this Dr accused me of having a conversion disorder along with my dysautonomia. I considered this diagnosis, but became 100% positive she was wrong. I could not convince her to change her mind. I made a big stink about it and other Drs ordered an EMG and convinced her to do a muscle biopsy. Her associate was going to take me as a client,if it was OK with her. Well, she wanted to keep me. I know she is still convinced that so many of my problems are psychological. She told me there is nothing else she can do for me, just take the meds my PCP put me on, but then decided to put me on the mito cocktail. Sorry this is so long. I was so flabergasted after this appointment and felt so relieved to not be going back to see her again. Now I know she got CPT deficiency and Madd mixed up. Fortunately I am goig to see Dr Whiteman a Mayo clinic on Jan 13th. I have heard good things about him. It still is scarey going to see another Dr. My illnees has progressed this past year. I feel lousey most of the time with so many symptoms and my ability to walk is getting less and less.I do try and stay active as much as possible. I often overdo it to find myself in the pit again. It takes so little to get there. This can't be fibro!!! My neurologist just could not understand why I had a handicap parking sticker and could no longer work as an occupational therapist. I am finding it hard to walk far on cement without tripping and falling. If Dr Whiteman can not give me an answer, it would just be nice to have a Dr validate my concerns. It would be so wonderful if this was psychological, because then I woudl have more of a chance of getting better. WEll two years of intensive psychotherapy and antidepressants and my physical symptoms are much worse. Fortunately my counselor no longer agrees with the conversion disorder diagnosis. I guess I just needed to vent and felt like tattling on my Dr. Thanks! Dawn 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 December 13, 2004 Report Share Posted December 13, 2004 ---Hi Laurie, Thanks for the words of encouragement. I want to know as much as I can. I will feel more at peace if I get a work up by someone who is more competant in this field. Dawn A In , Laureta Fitzgerald wrote: > Dawn > > I'm so sorry that you have had to go through this with your doctor. I > remember the frustration I felt when I was told that my problem was in my > head. Keep fighting to get an answer if you want one. It is more important > to some folks than others to have the diagnosis. I am glad I finally got > some answers. > > Good luck with the new doctor. > > laurie > > > From: " dawnanich " > > Reply-To: > > Date: Mon, 13 Dec 2004 03:51:24 -0000 > > To: > > Subject: To Barbara Seaman > > > > > > Hi Barbara, Thank you for posting so much information to the new > > member. I am sure you remember about how my electron microscopy > > mentioned a possible variation of a CPT dificiency. Since I have > > posted this ,I went to see my neurologist. > > > > My neurologist told me that something metabolic is going on, some > > kind of enzyme deficiency, possible CPT. SHe then stated that this > > is common among the general population. She did not think there was > > enough biopsy left for futhur analysis and felt it would not be > > worth looking into any furthur. My symptoms and abnormal gait don't > > match. I asked her what she thought my problem was. She said a > > variaty of things...fibromyalgia, dysautonomia, some kind of enzyme > > deficiency....See this Dr accused me of having a conversion disorder > > along with my dysautonomia. I considered this diagnosis, but became > > 100% positive she was wrong. I could not convince her to change her > > mind. I made a big stink about it and other Drs ordered an EMG and > > convinced her to do a muscle biopsy. Her associate was going to take > > me as a client,if it was OK with her. Well, she wanted to keep me. I > > know she is still convinced that so many of my problems are > > psychological. She told me there is nothing else she can do for me, > > just take the meds my PCP put me on, but then decided to put me on > > the mito cocktail. Sorry this is so long. > > > > I was so flabergasted after this appointment and felt so relieved to > > not be going back to see her again. Now I know she got CPT > > deficiency and Madd mixed up. Fortunately I am goig to see Dr > > Whiteman a Mayo clinic on Jan 13th. I have heard good things about > > him. It still is scarey going to see another Dr. My illnees has > > progressed this past year. I feel lousey most of the time with so > > many symptoms and my ability to walk is getting less and less.I do > > try and stay active as much as possible. I often overdo it to find > > myself in the pit again. It takes so little to get there. This can't > > be fibro!!! My neurologist just could not understand why I had a > > handicap parking sticker and could no longer work as an occupational > > therapist. I am finding it hard to walk far on cement without > > tripping and falling. > > > > If Dr Whiteman can not give me an answer, it would just be nice to > > have a Dr validate my concerns. It would be so wonderful if this was > > psychological, because then I woudl have more of a chance of getting > > better. WEll two years of intensive psychotherapy and > > antidepressants and my physical symptoms are much worse. Fortunately > > my counselor no longer agrees with the conversion disorder diagnosis. > > I guess I just needed to vent and felt like tattling on my Dr. > > Thanks! > > > > Dawn 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 December 13, 2004 Report Share Posted December 13, 2004 --- Hi Barbara, Thank you for the reply. I agree with your soapbox. When I was was not diagnosed with autonomic problems my visits to the Er where terrible. They even told me that your neurologist found nothing wrong with you. Once I got the diagnosis of dysautonomia, I was treated much better. I think this attitude is present with society in general. When you can give a reason (dx) for your disabilities, I think it seem more real to them. Otherwise you are considered a hypochondriac. I will keep everyone posted regarding my visit to Mayo. Take care, Dawn A In , " Barbara Seaman " wrote: > Hi Dawn, Yes, I do remember the CPT suggestion on your report and wondered > what was going on with you. I think you're absolutely right, your doc > confused MADD with CPT. Dr. Vladutiu has done at least one study on the > incidence of CPT mutations in the general population and it is not common. > MADD is. When I was diagnosed with CPT in 1983, I was told there were about > 50 cases in the world. Best estimates now run around 300-400 cases. Most > experts think it is generally under-diagnosed, and I believe that, given > what patients have to go through to get a diagnosis. In our diagnosis > survey, 50 CPT patients saw an average of 5 doctors over 8 years before they > received an accurate diagnosis. > > > > I am glad you are going to Mayo Clinic to see Dr. Whiteman. I don't know any > patients who have seen him, but if you have heard good things, that bodes > well. Patient grapevine is pretty reliable. And yes, I remember how scary it > was to see a new doc when I did not have a diagnosis. Pardon my soap box, > but I really feel strongly that the American health care system treats > patients with a diagnosis and patients without a diagnosis entirely > differently. Women with generalized fatigue and muscle pain especially get > blown off, IMO, often lumped into a stereotype. Oh, one of those. I never > had anyone tell me it was all in my head, but I got a lot of shrugs. Somehow > I would like to convey to these physicians how painful such an experience > can be. It takes considerable courage and determination to subject yourself > to that over and over. I realize these disorders are extremely complex and > difficult to diagnose and that some physicians don't want to deal with such > cases. If they would just be honest and say that rather than trivializing > the complaints, most patients would accept that point of view and look > elsewhere for help. > > > > Well, all this to say I am hopeful that Dr. Whiteman will, at a minimum, > treat you and your complaints with respect and perhaps even find some clues > that lead to answers. > > > > Let us know how it turns out. > > Barbara > > _____ > > From: dawnanich [mailto:manich@n...] > Sent: Sunday, December 12, 2004 9:51 PM > To: > Subject: To Barbara Seaman > > > > > Hi Barbara, Thank you for posting so much information to the new > member. I am sure you remember about how my electron microscopy > mentioned a possible variation of a CPT dificiency. Since I have > posted this ,I went to see my neurologist. > > My neurologist told me that something metabolic is going on, some > kind of enzyme deficiency, possible CPT. SHe then stated that this > is common among the general population. She did not think there was > enough biopsy left for futhur analysis and felt it would not be > worth looking into any furthur. My symptoms and abnormal gait don't > match. I asked her what she thought my problem was. She said a > variaty of things...fibromyalgia, dysautonomia, some kind of enzyme > deficiency....See this Dr accused me of having a conversion disorder > along with my dysautonomia. I considered this diagnosis, but became > 100% positive she was wrong. I could not convince her to change her > mind. I made a big stink about it and other Drs ordered an EMG and > convinced her to do a muscle biopsy. Her associate was going to take > me as a client,if it was OK with her. Well, she wanted to keep me. I > know she is still convinced that so many of my problems are > psychological. She told me there is nothing else she can do for me, > just take the meds my PCP put me on, but then decided to put me on > the mito cocktail. Sorry this is so long. > > I was so flabergasted after this appointment and felt so relieved to > not be going back to see her again. Now I know she got CPT > deficiency and Madd mixed up. Fortunately I am goig to see Dr > Whiteman a Mayo clinic on Jan 13th. I have heard good things about > him. It still is scarey going to see another Dr. My illnees has > progressed this past year. I feel lousey most of the time with so > many symptoms and my ability to walk is getting less and less.I do > try and stay active as much as possible. I often overdo it to find > myself in the pit again. It takes so little to get there. This can't > be fibro!!! My neurologist just could not understand why I had a > handicap parking sticker and could no longer work as an occupational > therapist. I am finding it hard to walk far on cement without > tripping and falling. > > If Dr Whiteman can not give me an answer, it would just be nice to > have a Dr validate my concerns. It would be so wonderful if this was > psychological, because then I woudl have more of a chance of getting > better. WEll two years of intensive psychotherapy and > antidepressants and my physical symptoms are much worse. Fortunately > my counselor no longer agrees with the conversion disorder diagnosis. > I guess I just needed to vent and felt like tattling on my Dr. > Thanks! > > Dawn 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...
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