Guest guest Posted September 19, 2004 Report Share Posted September 19, 2004 Hi all, I was diagnosed with a complex1+1v deficiency wwith cox neg fibres last year..no grey matter disease just symmetric lesions in the centrum semi-ovale and an emg showing no myopathy, neuropathy or PN..just unfortunatly a thoracic myleopathy possibly caused by B12 deficiency...my mum and I have tested neg on gene testing and the neuro has said this is not a neuro. illness but metabolic disease causing neuro.symptoms..I now see a metaboic consultant who he referred me to and this doc. has other mito. patients. I have been getting your digests for a long time now and posting on braintalk where Alice told me to ask my questions here...so here goes.. I have been reffered to a specialist endo clinic for CAH and steroid testing which conditions I was told by metabolic Doc are often found in mito. They already have evidence of steroid lack in me...has anyone else been tested for this and if so did treatment help you? I have kidney illness proven on MRA which is causing many symptoms and pain now despite normal blood/urine tests except for low potassium raised ammonia nad urea..this kidney disease tubularinterstitial nephritis I was told is often found in Mito. have any of you got this and how do you cope ??? We are also struggling to keep my autoimmune thyroid under control any advice?T4/T3/natural thyroid ? Had thyroid disease for 30 years now I also have rheumatoid factor on testing which GP thinks is also contributing to my problems and wonder what meds any of you take with mito to alleviate the joints swelling and muscle stiffness in this condition which is running alongside my mito. The metabolic doc also found massive parietal antibody activity which has inflamed all my stomach (endoscopy)and caused PA (B12 def) As a result of all this I have been told I have a mito.cyto not myopathy with endocrinopathies autoimmune mediated with no diabetes in myself or family.or cardiomyopathy. they have coronary artery disease Lots in fact most of what I have read does not 'fit' as most of the things listed at UMDF etc are not found in me it's almost as if this form of mito.cyto. is a seperate subset. I have high cholestral and the metabolic doc considered it okay to give me avorstatin..simvastatin made me awfully weak...I know that they find fatty oxidation defects when the thyroid is not correctly medicated and there is lots of research on that . I am not interested nor is my family in genes etc...the metabolic bloke here works on avoiding organ dysfunction and treating when neccesary things caused by the mito. I think it's more holistic Oh well sorry this is so long and I have probably made it all seem muddled.I hope some of you with similar forms may have some ideas/thoughts . Thanks a lot..Gillian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2004 Report Share Posted September 19, 2004 Gillian Welcome to posting. I am glad you are on the list. I have autoimmune thyroid disease which is separate from the mito. I have taken thyroid meds (synthroid) for over 40 years. It has maintained my levels in the normal range. I have arthritis and chronic tendonitis. I take Bextra for this, along with Glucosomine Chondrotin. Mine is not rheumatoid arthritis. I hope the doctor gets all your thyroid and electrolyte problems taken care of first. These could be causing some of the other problems. I have known people with mito who have lots of the other problems caused by mito without the neurological and muscular problems. I think this is kind of rare, but does exist. Mine started out as mostly muscular and I now have many organ systems involved. What is CAH? laurie > > Reply-To: > Date: Sun, 19 Sep 2004 15:28:45 -0000 > To: > Subject: First post here, > > Hi all, > I was diagnosed with a complex1+1v deficiency wwith cox neg fibres > last year..no grey matter disease just symmetric lesions in the > centrum semi-ovale and an emg showing no myopathy, neuropathy or > PN..just unfortunatly a thoracic myleopathy possibly caused by B12 > deficiency...my mum and I have tested neg on gene testing and the > neuro has said this is not a neuro. illness but metabolic disease > causing neuro.symptoms..I now see a metaboic consultant who he > referred me to and this doc. has other mito. patients. > I have been getting your digests for a long time now and posting on > braintalk where Alice told me to ask my questions here...so here > goes.. > I have been reffered to a specialist endo clinic for CAH and steroid > testing which conditions I was told by metabolic Doc are often found > in mito. They already have evidence of steroid lack in me...has > anyone else been tested for this and if so did treatment help you? > > I have kidney illness proven on MRA which is causing many symptoms > and pain now despite normal blood/urine tests except for low > potassium raised ammonia nad urea..this kidney disease > tubularinterstitial nephritis I was told is often found in Mito. > have any of you got this and how do you cope ??? > > We are also struggling to keep my autoimmune thyroid under control > any advice?T4/T3/natural thyroid ? Had thyroid disease for 30 years > now I also have rheumatoid factor on testing which GP thinks is also > contributing to my problems and wonder what meds any of you take > with mito to alleviate the joints swelling and muscle stiffness in > this condition which is running alongside my mito. > > The metabolic doc also found massive parietal antibody activity > which has inflamed all my stomach (endoscopy)and caused PA (B12 def) > As a result of all this I have been told I have a mito.cyto not > myopathy with endocrinopathies autoimmune mediated with no diabetes > in myself or family.or cardiomyopathy. they have coronary artery > disease > > Lots in fact most of what I have read does not 'fit' as most of the > things listed at UMDF etc are not found in me it's almost as if this > form of mito.cyto. is a seperate subset. I have high cholestral and > the metabolic doc considered it okay to give me > avorstatin..simvastatin made me awfully weak...I know that they find > fatty oxidation defects when the thyroid is not correctly medicated > and there is lots of research on that . > > I am not interested nor is my family in genes etc...the metabolic > bloke here works on avoiding organ dysfunction and treating when > neccesary things caused by the mito. I think it's more holistic > > Oh well sorry this is so long and I have probably made it all seem > muddled.I hope some of you with similar forms may have some > ideas/thoughts . > Thanks a lot..Gillian > > > > > > 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 September 19, 2004 Report Share Posted September 19, 2004 Gillian Welcome to posting. I am glad you are on the list. I have autoimmune thyroid disease which is separate from the mito. I have taken thyroid meds (synthroid) for over 40 years. It has maintained my levels in the normal range. I have arthritis and chronic tendonitis. I take Bextra for this, along with Glucosomine Chondrotin. Mine is not rheumatoid arthritis. I hope the doctor gets all your thyroid and electrolyte problems taken care of first. These could be causing some of the other problems. I have known people with mito who have lots of the other problems caused by mito without the neurological and muscular problems. I think this is kind of rare, but does exist. Mine started out as mostly muscular and I now have many organ systems involved. What is CAH? laurie > > Reply-To: > Date: Sun, 19 Sep 2004 15:28:45 -0000 > To: > Subject: First post here, > > Hi all, > I was diagnosed with a complex1+1v deficiency wwith cox neg fibres > last year..no grey matter disease just symmetric lesions in the > centrum semi-ovale and an emg showing no myopathy, neuropathy or > PN..just unfortunatly a thoracic myleopathy possibly caused by B12 > deficiency...my mum and I have tested neg on gene testing and the > neuro has said this is not a neuro. illness but metabolic disease > causing neuro.symptoms..I now see a metaboic consultant who he > referred me to and this doc. has other mito. patients. > I have been getting your digests for a long time now and posting on > braintalk where Alice told me to ask my questions here...so here > goes.. > I have been reffered to a specialist endo clinic for CAH and steroid > testing which conditions I was told by metabolic Doc are often found > in mito. They already have evidence of steroid lack in me...has > anyone else been tested for this and if so did treatment help you? > > I have kidney illness proven on MRA which is causing many symptoms > and pain now despite normal blood/urine tests except for low > potassium raised ammonia nad urea..this kidney disease > tubularinterstitial nephritis I was told is often found in Mito. > have any of you got this and how do you cope ??? > > We are also struggling to keep my autoimmune thyroid under control > any advice?T4/T3/natural thyroid ? Had thyroid disease for 30 years > now I also have rheumatoid factor on testing which GP thinks is also > contributing to my problems and wonder what meds any of you take > with mito to alleviate the joints swelling and muscle stiffness in > this condition which is running alongside my mito. > > The metabolic doc also found massive parietal antibody activity > which has inflamed all my stomach (endoscopy)and caused PA (B12 def) > As a result of all this I have been told I have a mito.cyto not > myopathy with endocrinopathies autoimmune mediated with no diabetes > in myself or family.or cardiomyopathy. they have coronary artery > disease > > Lots in fact most of what I have read does not 'fit' as most of the > things listed at UMDF etc are not found in me it's almost as if this > form of mito.cyto. is a seperate subset. I have high cholestral and > the metabolic doc considered it okay to give me > avorstatin..simvastatin made me awfully weak...I know that they find > fatty oxidation defects when the thyroid is not correctly medicated > and there is lots of research on that . > > I am not interested nor is my family in genes etc...the metabolic > bloke here works on avoiding organ dysfunction and treating when > neccesary things caused by the mito. I think it's more holistic > > Oh well sorry this is so long and I have probably made it all seem > muddled.I hope some of you with similar forms may have some > ideas/thoughts . > Thanks a lot..Gillian > > > > > > 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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