tag:blogger.com,1999:blog-3983970674487438009.post2439098162803806675..comments2023-10-15T08:35:34.255-07:00Comments on Living with Mastocytosis: bladders and brainsBridgethttp://www.blogger.com/profile/16721032881251569586noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-3983970674487438009.post-28932808623133529382013-10-02T23:03:01.806-07:002013-10-02T23:03:01.806-07:00btw, after i posted that last comment, i found thi...btw, after i posted that last comment, i found this for you - skip to the discussion and you'll find why we have trouble with sleep at night and are so unbelievably tired during the day:<br /><br />http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321431/Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-58932349608901394602013-10-02T20:44:30.123-07:002013-10-02T20:44:30.123-07:00darn, my ipad just ate my comment...suffice to say...darn, my ipad just ate my comment...suffice to say, we have trouble with sleep because histamine levels are supposedly higher at night. also, i had terrible neck pain before i went on vitamin d3 (not d2). i've read that we can be especially d-deficient, but most people are anyway. i'm new to your blog and enjoying it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-11268915706744467982008-10-31T11:46:00.000-07:002008-10-31T11:46:00.000-07:00anonymous#2, oh the diagnostic process was insane ...anonymous#2, <BR/><BR/>oh the diagnostic process was insane and took years...i had been tested for every autoimmune disease possible, felt like my life was turning into a really bad episode of House...it was ridiculous. I am very happy with my PCP and Mast Cell specialist, so that helps a lot. I think it will just take some time to figure out what meds work the best for me in what combination...i'm still trying to get to that place.Bridgethttps://www.blogger.com/profile/16721032881251569586noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-38352642294498791382008-10-31T11:44:00.001-07:002008-10-31T11:44:00.001-07:00kim, usually i try to do that too, i don't like ho...kim, <BR/><BR/>usually i try to do that too, i don't like hospitals or ers, and try to manage my symptoms with my meds as much as possible...it just gets too daunting after a whileBridgethttps://www.blogger.com/profile/16721032881251569586noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-78615621811545595922008-10-31T11:44:00.000-07:002008-10-31T11:44:00.000-07:00anonymous #1, hopefully i will not need a chiari s...anonymous #1, hopefully i will not need a chiari specialist...i don't really think it's a concern so much as a paranoia, something i'm trying to address...but yeah, if it comes down to it i'll obviously weigh my options very heavily. thankfully living in boston gives me a lot of great resources when it comes to medical professionalsBridgethttps://www.blogger.com/profile/16721032881251569586noreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-90338809547193071092008-10-30T19:36:00.000-07:002008-10-30T19:36:00.000-07:00we all tend to think that we are hypochondriacs in...we all tend to think that we are hypochondriacs in the beginning. it sounds crazy that we are actually relieved to find out that we do indeed have something really wrohg with us. but then to find out that it is so unusual and hardly anyone knows what to do to help us. been through all that too girl. it sounds like you have atleast found a doc that will listen to ya . that is half the battle. once we start naming all of our symptoms ,we get looked at like we are crazy or drug seekers. hang in there after a few more years of it you will know better how to treat your symptoms than your docs. if the docs would listen to us they would save themselves alot of time and us alot of pain and heartache.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-4448515151319136622008-10-30T03:02:00.000-07:002008-10-30T03:02:00.000-07:00make sure you get a Chiari specialist . they are a...make sure you get a Chiari specialist . they are all over the US.A neurosurgeon not a neurologist. www.asap.orgAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3983970674487438009.post-80941207441477106162008-10-29T19:15:00.000-07:002008-10-29T19:15:00.000-07:00Good for you to get that over with!!! and no bad c...Good for you to get that over with!!! and no bad came out of it!!! I understand what you say. I know it's hard! It is very scary when even Doctors don't know what to do with us. When i was really ill after a flight my husband begged me to go to the hospital, but I was afraid they wouldn't know what to do with me. So, I doubled all my meds, per my family doctor....and came out of "it".Kimhttps://www.blogger.com/profile/14953960170577805148noreply@blogger.com