Guest guest Posted December 21, 2001 Report Share Posted December 21, 2001 Mastocytosis, also known as mast cell disease - it is a blood disorder where the body makes too many mast cells. It is currently labeled as a rare disease, but believed to be grossly underdiagnosed. On average, it takes 10 years for a masto patient to be properly diagnosed. The symptoms vary greatly in severity and in variety from one patient to another. If you experience any of the following, masto should be investigated (and the more of these symptoms you have, the more likely it's masto): 1) physical urticarias: DPU, cholinergic, dermographism, cold-induced, solar, etc.) 2) gastrointestinal problems: diarrhea, constipation, GERD (acid reflux), heartburn, nausea, vomiting, etc. (any one or combination of these) 3) markings (urticaria pigmentosa): brownish bruises left after hiving that DO NOT go through normal color changes of dark to green to yellowish, marks that look like moles, red marks that looked like a squashed spider, little nodules to large plaques - to get an idea of how varied these markings can be, see www.dermis.net/doia/diagnose.asp?zugr=d & lang=e & diagnr=757350 & topic=t Note that all people with urticaria pigmentosa have mastocytosis, but not all people with mastocytosis have urticaria pigmentosa. 4) flushing - redness, feeling of warmth (in those who suffer anaphylaxis, flushing is often a sign that you are about to have an anaphylatic reaction) 5) anaphylaxis or anaphylactoid episodes 6) bone pain, osteoporosis, bones break or crack 7) enlarged spleen or liver or swollen lymph nodes 8) irritability 9) 'brain fog' - inability at times to concentrate, forgetfulness, feel like you can't think clearly 10) blood pressure fluctations - too high, too low, or both alternating; I also read that some masto patients tend to have 'naturally' low blood pressure all the time, so during an attack it drops even more or skyrockets 11) itching with or without hives 12) headaches, including migraines Air hugs, Jackie Life is tough, but I'm tougher. _________________________________________________________________ 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 December 21, 2001 Report Share Posted December 21, 2001 Mastocytosis, also known as mast cell disease - it is a blood disorder where the body makes too many mast cells. It is currently labeled as a rare disease, but believed to be grossly underdiagnosed. On average, it takes 10 years for a masto patient to be properly diagnosed. The symptoms vary greatly in severity and in variety from one patient to another. If you experience any of the following, masto should be investigated (and the more of these symptoms you have, the more likely it's masto): 1) physical urticarias: DPU, cholinergic, dermographism, cold-induced, solar, etc.) 2) gastrointestinal problems: diarrhea, constipation, GERD (acid reflux), heartburn, nausea, vomiting, etc. (any one or combination of these) 3) markings (urticaria pigmentosa): brownish bruises left after hiving that DO NOT go through normal color changes of dark to green to yellowish, marks that look like moles, red marks that looked like a squashed spider, little nodules to large plaques - to get an idea of how varied these markings can be, see www.dermis.net/doia/diagnose.asp?zugr=d & lang=e & diagnr=757350 & topic=t Note that all people with urticaria pigmentosa have mastocytosis, but not all people with mastocytosis have urticaria pigmentosa. 4) flushing - redness, feeling of warmth (in those who suffer anaphylaxis, flushing is often a sign that you are about to have an anaphylatic reaction) 5) anaphylaxis or anaphylactoid episodes 6) bone pain, osteoporosis, bones break or crack 7) enlarged spleen or liver or swollen lymph nodes 8) irritability 9) 'brain fog' - inability at times to concentrate, forgetfulness, feel like you can't think clearly 10) blood pressure fluctations - too high, too low, or both alternating; I also read that some masto patients tend to have 'naturally' low blood pressure all the time, so during an attack it drops even more or skyrockets 11) itching with or without hives 12) headaches, including migraines Air hugs, Jackie Life is tough, but I'm tougher. _________________________________________________________________ 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 December 23, 2001 Report Share Posted December 23, 2001 Whoops, I don't think this was ever investigated but I'll check. If you have it, what does it mean? BB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 Depends on the type of masto (there are several). Pretty much the same meds are used to control both illnesses, but there are a couple others that are used in masto, including good old Gastrocrom. For more about masto treatment, see: http://people.ne.mediaone.net/jesshobart/Treatment.html Check out some of the sites regarding masto - some good ones are: http://www.emedicine.com/med/topic1401.htm http://www.users.qwest.net/~cybermom/ http://people.ne.mediaone.net/jesshobart/ and the best one of all, by the Mastocytosis Society: http://www.mastocytosis.com/ ----Original Message Follows---- From: brilliantb@... Reply-To: urticaria To: urticaria Subject: Re: brilliantb - masto?? Date: Sun, 23 Dec 2001 08:47:35 EST Whoops, I don't think this was ever investigated but I'll check. If you have it, what does it mean? BB ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 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 23, 2001 Report Share Posted December 23, 2001 Depends on the type of masto (there are several). Pretty much the same meds are used to control both illnesses, but there are a couple others that are used in masto, including good old Gastrocrom. For more about masto treatment, see: http://people.ne.mediaone.net/jesshobart/Treatment.html Check out some of the sites regarding masto - some good ones are: http://www.emedicine.com/med/topic1401.htm http://www.users.qwest.net/~cybermom/ http://people.ne.mediaone.net/jesshobart/ and the best one of all, by the Mastocytosis Society: http://www.mastocytosis.com/ ----Original Message Follows---- From: brilliantb@... Reply-To: urticaria To: urticaria Subject: Re: brilliantb - masto?? Date: Sun, 23 Dec 2001 08:47:35 EST Whoops, I don't think this was ever investigated but I'll check. If you have it, what does it mean? BB ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 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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