Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Hi, My first diagnosis was Fibromyalgia. Then CFS, there was a question of MS, but also my brain MRI had lesions but not typical of MS. I have been evaluated for Lupus over the years about 4 different times because of elevated ANA but no rashes and no joint pain so I didn't get a Lupus diagnosis. They have looked for other autoimmune disorders but other than Raynaud's, nothing else seemed to apply. I was also high for epstein barr. My ANA has been as high as 2500. Very confusing. Especially since the Mito specialist I saw recently indicated that definite diagnosis with a positive muscle biopsy is only been true for 15-20% of those with clinical diagnosis based on symptoms. Adam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Adam I'm thinking that low a percentage is from frozen muscle biopsies and not the ones on fresh tissue to test for respiratory chain function. laurie > From: AdamM321@... > Reply-To: > Date: Wed, 12 May 2004 11:20:17 EDT > To: > Subject: Asking A Question For A Friend > > Hi, > > My first diagnosis was Fibromyalgia. Then CFS, there was a question of MS, > but also my brain MRI had lesions but not typical of MS. I have been > evaluated > for Lupus over the years about 4 different times because of elevated ANA but > no rashes and no joint pain so I didn't get a Lupus diagnosis. They have > looked for other autoimmune disorders but other than Raynaud's, nothing else > seemed to apply. I was also high for epstein barr. My ANA has been as high > as > 2500. > > Very confusing. Especially since the Mito specialist I saw recently > indicated that definite diagnosis with a positive muscle biopsy is only been > true for > 15-20% of those with clinical diagnosis based on symptoms. > > Adam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Anita, It sounds like we do have a lot in common with our health history. More people than I can count on this list have, at one time or another, been told that this is " all in your head " . I think that seems to be the best diagnosis for a doctor to give when they don't know what to do or just doesn't know what the answer is. I hope you are passed many of those days! Smiles, a On Wed, 12 May 2004 01:03:11 -0000 " Anita " melobeau@...> writes: Hi a, Your health history shares some of the same " high points " as mine....even the " it's all in your head " . Glad to hear you are diagnosed and hope your good days outnumber your bad ones. Anita 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 May 12, 2004 Report Share Posted May 12, 2004 Hi a, I DOES sounds like we have a lot in common! Re: " It's all in your head " , YUP, the seizures, jerking, headaches, hearing problems, vision problems, cramps in the neck....Hey doc, they all ARE located above my shoulders......guess that qualifies as " all in my head " , eh? :-) Anita > Anita, > It sounds like we do have a lot in common with our health > history. More people than I can count on this list have, at one time or > another, been told that this is " all in your head " . I think that seems > to be the best diagnosis for a doctor to give when they don't know what > to do or just doesn't know what the answer is. I hope you are passed > many of those days! > Smiles, > a > > On Wed, 12 May 2004 01:03:11 -0000 " Anita " writes: > > > Hi a, Your health history shares some of the same " high > points " as mine....even the " it's all in your head " . Glad to hear you > are diagnosed and hope your good days outnumber your bad > ones. > > Anita > > > > > 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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