Guest guest Posted January 25, 2002 Report Share Posted January 25, 2002 Sonya, GOOD for you!!! Let us know when your appointment is and how it goes. Jody _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2002 Report Share Posted January 25, 2002 Sonya, GOOD for you!!! Let us know when your appointment is and how it goes. Jody _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2002 Report Share Posted January 25, 2002 > Sorry one more thing she mentioned I need to take B12 but she did not > explain why. Any idea. Sonya, It's my understanding that the B-12 is vital to the muscles. It helps them stay relaxed and healthy. I know before I started the B-12 I used to have a lot more muscle aches and cramps. There may be more reasons but I think that's the big one. Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2002 Report Share Posted January 25, 2002 She did not do any tests to determine any deficiencies. I assume the only reason why she suggested it is because I asked her should I be on some type of vitamin. I have found another docotor from the top doc list . I think this woman was trying to kill me. Sonya Information Systems Administrator Diamond Offshore Drilling, Inc. 281/647-4001 Office 281/647-4025 Fax srharris@... Re: Test Results Hi Sonya, Hopefully your doc did a blood level or saw evidence in your CBC of B12 deficiency. If not, you can develop imbalances of folate and other B vitamins by only taking B12. We do often have deficiencies of B vitamins, particularly B1, B2 and B6 and multivitamins generally have the right balance of the B vitamins. You can also add B complex that contains all the B's in the right proportions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 The TSH can be very misleading. It is a pituitary hormone that regulates your thyroid hormone levels. What your really need to know is how much thyroid hormone you have in your blood. Levels of T3 and T4 or better yet the free thyroid hormones FT4 and FT3 will tell you this. TSH is a good test for screening thyroid function in new patients. For patients with thyroid antibodies, including people who had RAI or on anti-thyroid drugs, TSH may be normal even though you're hypothyroid. On www.suite101.com, I have an article called The TSH Nightmare that explains this. you can do a search on graves disease or by the title. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 The TSH can be very misleading. It is a pituitary hormone that regulates your thyroid hormone levels. What your really need to know is how much thyroid hormone you have in your blood. Levels of T3 and T4 or better yet the free thyroid hormones FT4 and FT3 will tell you this. TSH is a good test for screening thyroid function in new patients. For patients with thyroid antibodies, including people who had RAI or on anti-thyroid drugs, TSH may be normal even though you're hypothyroid. On www.suite101.com, I have an article called The TSH Nightmare that explains this. you can do a search on graves disease or by the title. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 The TSH can be very misleading. It is a pituitary hormone that regulates your thyroid hormone levels. What your really need to know is how much thyroid hormone you have in your blood. Levels of T3 and T4 or better yet the free thyroid hormones FT4 and FT3 will tell you this. TSH is a good test for screening thyroid function in new patients. For patients with thyroid antibodies, including people who had RAI or on anti-thyroid drugs, TSH may be normal even though you're hypothyroid. On www.suite101.com, I have an article called The TSH Nightmare that explains this. you can do a search on graves disease or by the title. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 Hi Dawn, It is NOT all in your head...unfortunately too many doctors do this to us, and when we get into our 40's it is either all in our heads or *female* problems. You are not being petty at all. To get to quality back into your life you need to learn every aspect of this disease and become very proactive in your treatment. It sounds like that is more than we can deal with at times, but it happens as long as you keep on learning, and finding new doctors when all else has failed with our current docs. Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 Hi Dawn, It is NOT all in your head...unfortunately too many doctors do this to us, and when we get into our 40's it is either all in our heads or *female* problems. You are not being petty at all. To get to quality back into your life you need to learn every aspect of this disease and become very proactive in your treatment. It sounds like that is more than we can deal with at times, but it happens as long as you keep on learning, and finding new doctors when all else has failed with our current docs. Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2002 Report Share Posted February 12, 2002 Hi Dawn, It is NOT all in your head...unfortunately too many doctors do this to us, and when we get into our 40's it is either all in our heads or *female* problems. You are not being petty at all. To get to quality back into your life you need to learn every aspect of this disease and become very proactive in your treatment. It sounds like that is more than we can deal with at times, but it happens as long as you keep on learning, and finding new doctors when all else has failed with our current docs. Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 , Not knowing what the doctor had tested for with the biopsy, it would be really hard to say. Was it a fresh biopsy, or was the sample frozen and sent to a lab someplace? A negative test result, unless it is fresh, doesn't mean Bob doesn't have mito. I would recommend you ask for a copy of the actual biopsy report. Would he e-mail them to you or fax them? I'm sorry I don't have any advise with disability questions. I am still plugging away at work, but I have a desk job that I can still do most days, or course the house never gets done because I am whipped out by the time I get home. wrote: >Hi everyone! Bob's neuro emailed us the test results of his biopsy >today. (That's right - our doc emails us all the time. If we email him >with a question, he will respond usually within 24hrs). >Anyway - He said there were no abnormalities in the biopsy but he is >sending the sample (which he said is a bit small) to have some special >tests done. He did not elaborate. Would any of you like to take a >gander? >Needless to say, Bob is beside himself. We figured this would tell us >something, but alas! He is searching the want ads as I write this. >He thinks he can get a job!!! I can't let him do that! He never >knows what kind of shape he'll be in from day to day or minute to >minute for that matter. He has waited a 1-1/2 so far without working. > We have family that helps us, albiet that won't last much longer. >The money tree is drying up. I just don't know what to do and neither >does he. What kind of SS can you get without a dx? We are currently >in a " reconsideration " phase and have yet to have to officially >appeal. He goes to see a SS doctor next week without a definitive dx, >without any paper work from the neuro (we have asked him to help and >waiting for his response). Do any of you long timers have any >suggestions? I am out of steam. > >Thanks for being there and I wish you and all of yours a better day >tomorrow: > > and Bob >Portsmouth VA > > > >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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 and Bob I am guessing as I don't know what the biopsy was tested for, but many docs think that if they don't find ragged red fibers, that they don't have mito. If that were the case, most of us would not have mito. Besides getting a copy of the results like advised, I'd also ask him what additional tests are to be run and what might they show. As for the disability thing, it is going to be hard without a diagnosis. Have you been to an MDA clinic? They might give a diagnosis of a neuromuscular disease. laurie > > Reply-To: > Date: Tue, 29 Jul 2003 00:59:54 -0000 > To: > Subject: test results > > Hi everyone! Bob's neuro emailed us the test results of his biopsy > today. (That's right - our doc emails us all the time. If we email him > with a question, he will respond usually within 24hrs). > Anyway - He said there were no abnormalities in the biopsy but he is > sending the sample (which he said is a bit small) to have some special > tests done. He did not elaborate. Would any of you like to take a > gander? > Needless to say, Bob is beside himself. We figured this would tell us > something, but alas! He is searching the want ads as I write this. > He thinks he can get a job!!! I can't let him do that! He never > knows what kind of shape he'll be in from day to day or minute to > minute for that matter. He has waited a 1-1/2 so far without working. > We have family that helps us, albiet that won't last much longer. > The money tree is drying up. I just don't know what to do and neither > does he. What kind of SS can you get without a dx? We are currently > in a " reconsideration " phase and have yet to have to officially > appeal. He goes to see a SS doctor next week without a definitive dx, > without any paper work from the neuro (we have asked him to help and > waiting for his response). Do any of you long timers have any > suggestions? I am out of steam. > > Thanks for being there and I wish you and all of yours a better day > tomorrow: > > and Bob > Portsmouth VA > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2003 Report Share Posted July 29, 2003 Hi and Bob, I was on SSD before I had the diagnosis of Mito. I do have the addition of hearing loss, but I don't think that the hearing loss alone was the qualifying issue. Just be very honest with the qualifying doctors about what is happening. I know how Bob feels there about the lack of the diagnosis. Every time that happened to me, I assumed my problems were in my head (doctors were very good and helping me to think that), and tried to pretend I didn't have them only to crash a little down the road with more problems. Both of you hang in there, Ruth Ruth's Cochlear Implant History: N22 May 1,1987 N22 removed Oct. 30, 2000 for MRI N24 Nov.1,2000 3G May 18,2001 Diagnosis: Mitochondrial Myopathy Sept. 2001 test results > Hi everyone! Bob's neuro emailed us the test results of his biopsy > today. (That's right - our doc emails us all the time. If we email him > with a question, he will respond usually within 24hrs). > Anyway - He said there were no abnormalities in the biopsy but he is > sending the sample (which he said is a bit small) to have some special > tests done. He did not elaborate. Would any of you like to take a > gander? > Needless to say, Bob is beside himself. We figured this would tell us > something, but alas! He is searching the want ads as I write this. > He thinks he can get a job!!! I can't let him do that! He never > knows what kind of shape he'll be in from day to day or minute to > minute for that matter. He has waited a 1-1/2 so far without working. > We have family that helps us, albiet that won't last much longer. > The money tree is drying up. I just don't know what to do and neither > does he. What kind of SS can you get without a dx? We are currently > in a " reconsideration " phase and have yet to have to officially > appeal. He goes to see a SS doctor next week without a definitive dx, > without any paper work from the neuro (we have asked him to help and > waiting for his response). Do any of you long timers have any > suggestions? I am out of steam. > > Thanks for being there and I wish you and all of yours a better day > tomorrow: > > and Bob > Portsmouth VA > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2003 Report Share Posted July 29, 2003 Dear and Bob, I'm so sorry the biopsy didn't (yet) show the mito. I can really empathize because I have been 15 yearws without a diagnosis. it is so discouraging. However, i was granted disability (now this is in Canada) on the basis of my actual functioning (ie, reports from docs, physios etc) not because of my non- diagnosis- although for administrative purposes they gave me some vague diagnosis-, Celia(hope you can get the money things sorted out) - In , Laureta Fitzgerald <lfitzger@j...> wrote: > and Bob > > I am guessing as I don't know what the biopsy was tested for, but many docs > think that if they don't find ragged red fibers, that they don't have mito. > If that were the case, most of us would not have mito. > > Besides getting a copy of the results like advised, I'd also ask him > what additional tests are to be run and what might they show. > > As for the disability thing, it is going to be hard without a diagnosis. > Have you been to an MDA clinic? They might give a diagnosis of a > neuromuscular disease. > > laurie > > > From: " " <cindy.roo@v...> > > Reply-To: > > Date: Tue, 29 Jul 2003 00:59:54 -0000 > > To: > > Subject: test results > > > > Hi everyone! Bob's neuro emailed us the test results of his biopsy > > today. (That's right - our doc emails us all the time. If we email him > > with a question, he will respond usually within 24hrs). > > Anyway - He said there were no abnormalities in the biopsy but he is > > sending the sample (which he said is a bit small) to have some special > > tests done. He did not elaborate. Would any of you like to take a > > gander? > > Needless to say, Bob is beside himself. We figured this would tell us > > something, but alas! He is searching the want ads as I write this. > > He thinks he can get a job!!! I can't let him do that! He never > > knows what kind of shape he'll be in from day to day or minute to > > minute for that matter. He has waited a 1-1/2 so far without working. > > We have family that helps us, albiet that won't last much longer. > > The money tree is drying up. I just don't know what to do and neither > > does he. What kind of SS can you get without a dx? We are currently > > in a " reconsideration " phase and have yet to have to officially > > appeal. He goes to see a SS doctor next week without a definitive dx, > > without any paper work from the neuro (we have asked him to help and > > waiting for his response). Do any of you long timers have any > > suggestions? I am out of steam. > > > > Thanks for being there and I wish you and all of yours a better day > > tomorrow: > > > > and Bob > > Portsmouth VA > > > > > > Quote Link to comment Share on other sites More sharing options...
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