tag:blogger.com,1999:blog-3983970674487438009.post3099419355477218255..comments2023-10-15T08:35:34.255-07:00Comments on Living with Mastocytosis: hello helloBridgethttp://www.blogger.com/profile/16721032881251569586noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-3983970674487438009.post-57605716186913755392010-12-27T00:10:03.147-08:002010-12-27T00:10:03.147-08:00Ami, your email address doesn't seem to work :...Ami, your email address doesn't seem to work :(Bridgethttps://www.blogger.com/profile/16721032881251569586noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-24399739735176064152010-12-02T14:05:53.643-08:002010-12-02T14:05:53.643-08:00Hi Bridget...
When you get on this blog, I would l...Hi Bridget...<br />When you get on this blog, I would like to ask you a question about your treatment in private... I have SM as well..... <br />or shoot me an email and I will email you the question.. .thanks girl!<br /><br />Ami<br /><br />princccess0@gmail.comUnknownhttps://www.blogger.com/profile/00728836687501985215noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-63806931548108078662010-11-01T14:24:11.477-07:002010-11-01T14:24:11.477-07:00Great blog. Do you know of any other blogs about ...Great blog. Do you know of any other blogs about Mastocytosis? I am trying to make a list for a website my wife and I just started Mastocytoma.orgUnknownhttps://www.blogger.com/profile/09042005104383550673noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-79608650787525453052010-09-17T09:46:40.733-07:002010-09-17T09:46:40.733-07:00Hi, my wife was diagnosed with Systemic Masto abou...Hi, my wife was diagnosed with Systemic Masto about 2 years ago, but has obviously had it since being an infant. She has been getting a lot worse lately, over the last 2 months she has become almost unfunctional. Her fatigue has gone to where she is sleeping almost 17 hours a day now. She is only on Allegra, Zyrtec, Rintanidine, and occasionally benedryll. <br /><br />You seem to know quite a bit about this and are in touch with the right doctors.<br /><br />Your on Gastrocrom right? Did that help fatigue at all? Bone pain? Her bone pain is severe now, but it is hard to tell because she is a paraplegic as well, so we don't know which one is causing the pain? Anyway, if you could let me know if Gastrocrom is what we should look at adding. Or if you know of something else that might help, the doctors we are seeing are less than helpful. At least they got the diagnosis right.<br /><br />Your blog has helped me understand more. I hope you keep it up.<br /><br />Thanks<br />DavidDavidnoreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-80172957538961574862010-09-05T00:49:38.432-07:002010-09-05T00:49:38.432-07:00I have gifted you with the One Lovely Blog award. ...I have gifted you with the One Lovely Blog award. You can check it out on noextendedwarranty.blogspot.com.<br /><br />I agree - there is more to life with chronic illness that doling your spoons out. I have branched out to other cutlery of which I have drawers full.<br /><br />Since it's been awhie since you last posted, hoping your lymph gland problem turned out OK!WinnyNinny PooPoohttps://www.blogger.com/profile/13237156887425609665noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-3776671342768910062010-08-09T01:22:35.811-07:002010-08-09T01:22:35.811-07:00It sounds like you could just have the skin manife...It sounds like you could just have the skin manifestation of masto (i think it's called chronic urticarea) which can be just as frustration and debilitating. if you're in or near boston i'd suggest seeing Dr. Richard Horan (he's an awesome dermatologist) otherwise I would try the tmsforacure.org website to see if there are any doctors in your area who are familiar with itBridgethttps://www.blogger.com/profile/16721032881251569586noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-1510895950123005672010-07-29T11:59:25.506-07:002010-07-29T11:59:25.506-07:00Hi,
I'm pretty sure I have systemic mastocyto...Hi,<br /><br />I'm pretty sure I have systemic mastocytosis, but so far the physicians where I live (who admittedly don't have much knowledge about the disease) haven't been able to confirm it in tests.<br /><br />For about a year and a half now (but increasingly bad over the past several months) I've had debilitating nausea (it's HORRIBLE in the morning - I wake up retching), loose stools, a constant feeling of tightness in my chest (often accompanied by a dry cough), and I constantly erupt out in hives. I'll also get these tan/brown spots that when scratched will get kind of flakey around them. They get REALLY red and itchy and then in about thirty minutes they will subside and leave this raised tan spot - about the size of half a pencil eraser.<br /><br />My beta tryptase blood test and 24-hour urine test came back okay, but a skin biopsy came back showing increased mast cells. Can you please give me some advice?<br /><br />Thanks,<br />KristyKritter Krithttps://www.blogger.com/profile/00909281895847078917noreply@blogger.com