Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi : Thanks for responding to my story, but I was just wondering if there was a particular thing that jumped out at you that made you say so strongly that I should be tested for masto, because when I read the description of masto, it does not sound like my symptoms (at the least the website I went to). I guess I should not dismiss anything at this point. Can you tell me where I can found out about the specific tests to do for masto? I don't like to just rely on the doctors .... I like to go in to my appointments knowing what tests are out there. Sincerely, Molly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 There are a few different tests for Masto. One is a skin biopsy which has to be stained specifically for mast cells, there is an alpha protryptase (blood test), bone marrow biopsy, 24 hr METHYL urine test, total tryptase (not very reliable). Any test for masto can RULE IN masto but not a single one can RULE OUT masto. Masto is a bit different in every single person, there are no two alike. It can manifest itself differently in each person. I have two children with Masto and they are exact opposites in many of their symptoms. Alena has several forms of urticaria, diarrea, severe flushing, headaches, body pain, fractures etc and Olivia is constipated, never flushes, not a single form of urticaria, severe ear trouble and etc. See, completely different same disease. It depends alot on where in your body those mast cells are lurking. I honestly think it would really be worth you ruling it out and maybe getting in contact with a few masto people that I know. Much Love, ~Alena's Mom Attn - Masto symptoms > Hi : > > Thanks for responding to my story, but I was just wondering if there was a > particular thing that jumped out at you that made you say so strongly that I > should be tested for masto, because when I read the description of masto, it > does not sound like my symptoms (at the least the website I went to). I > guess I should not dismiss anything at this point. Can you tell me where I > can found out about the specific tests to do for masto? I don't like to just > rely on the doctors .... I like to go in to my appointments knowing what > tests are out there. Sincerely, Molly > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribe > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 There are a few different tests for Masto. One is a skin biopsy which has to be stained specifically for mast cells, there is an alpha protryptase (blood test), bone marrow biopsy, 24 hr METHYL urine test, total tryptase (not very reliable). Any test for masto can RULE IN masto but not a single one can RULE OUT masto. Masto is a bit different in every single person, there are no two alike. It can manifest itself differently in each person. I have two children with Masto and they are exact opposites in many of their symptoms. Alena has several forms of urticaria, diarrea, severe flushing, headaches, body pain, fractures etc and Olivia is constipated, never flushes, not a single form of urticaria, severe ear trouble and etc. See, completely different same disease. It depends alot on where in your body those mast cells are lurking. I honestly think it would really be worth you ruling it out and maybe getting in contact with a few masto people that I know. Much Love, ~Alena's Mom Attn - Masto symptoms > Hi : > > Thanks for responding to my story, but I was just wondering if there was a > particular thing that jumped out at you that made you say so strongly that I > should be tested for masto, because when I read the description of masto, it > does not sound like my symptoms (at the least the website I went to). I > guess I should not dismiss anything at this point. Can you tell me where I > can found out about the specific tests to do for masto? I don't like to just > rely on the doctors .... I like to go in to my appointments knowing what > tests are out there. Sincerely, Molly > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribe > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 , Did Alena ever have a total tryptase come back within the norm? 's doctors want to use the tryptase as the determining test for masto. Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 She and Olivia both have normal range alpha protryptase (theres both was 5.5) and normal range is 0-12 Love, Re: Attn - Masto symptoms , Did Alena ever have a total tryptase come back within the norm? 's doctors want to use the tryptase as the determining test for masto. Irene ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: urticaria-unsubscribe ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new.Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. Quote Link to comment Share on other sites More sharing options...
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