hi my name is Vicky and I was diagnose with indolent systemic mastocytosis in September, and about a month later i began to have swollen feet, knees knucles and hands and excruciateing pain of the hips. I am currently taking allegra d twice a day viatamin d 6000mg and 500mg of viatamin c. how should i go about talking to my doctors about this? Can this be a progression in my masto?

Dr. Roling called me today and I do NOT have TMEP.  He called this good news/bad news--good that I don't have TMEP, bad that he doesn't know what it is.  He sent it to a specific lab technician familiar with TMEP so we would not get a false negative.  The report said "hypersensitivity reaction" and no mast cells were found.  He said it was NOT hives, as my first bx from the first derm reported.  He said I could see an allergist but it would be like finding a needle in a haystack.  He said to use the Clobetasol as needed (which he confirmed would NOT clear up TMEP as Derm #1 said) and that I could look into light treatment (lousy insurance, too expensive, not an option).  I already use a special laundry detergent for those with sensitive skin and have not been able to think of anything at all I changed a year or so ago when the rash first showed up.  I will see if I notice anything when I have flares, but in the past year the rash stays the same most of the time.  I'm still glad I was able to see Dr. Roling and feel like although I don't have an answer, I did see a great doctor.  Thank you all so much for your input!!
Beverly

Joan i'm in Winston Salem, NC and i have been seeing DR.Dykewicz which is a allergist specialist i was referred to him be my oncologist, hes very fimiliar with matocytosis and other mast cell diorders . I actually went to see him today and he put me on predisone for five days,Singular, azelastine, ipratropium, plus he wants me to keep taking allegra d twice a day. He did a trypse,and some blood work to check for inflamation test and he refered me to a mast specialist which should get in contact with me tomorrow. Lord willing i'll get some kind of relief soon. Last night i woke up at 3am in pain and couldn't breath through my nose.

Her name is DR. Mary Kanovich shes with hemotogy dept, my apt isn't till Febuary 6 ,2012.

If it's at all possible, we usually recommend that patients, especially newly diagnosed, go to see a mast cell expert/researcher.  This is such a rare diagnosis, and the vast majority of them don't have much of an  idea of how to treat us.  The doctor recommended to you is not a mast cell expert or researcher as far as I know.

The experts will be best able to help you become more stable and to put you on a regimen of meds that will control your symptoms.  They'll do additional testing, if needed, to confirm the diagnosis and to rule out all other possible diagnoses, if they haven't already.

Then they'll send you home and work through you're doctor if any questions or problems arise.  Dr. Cem Akin or Dr. Marianna Castells are excellent in Boston.  There's also Dr. Afrin, whom I mentioned before.  If you can't see a major expert due to financial difficulties or insurance, then I would see if any of your doctors would be willing to call the experts on your behalf.  They often do phone consults with other doctors around the country.

It's a long time until February, and you're having some severe symptoms.  Anyway, something to think about....

wow, I am SO glad I found this forum! Looking and reading all this makes me feel like I am SO NOT ALONE!! I've also KNOWN I'm NOT NUTS! I have said OVER and OVER again, that ALL the "Diagnosis" I have are ALL CONNECTED! After finding this forum and reading all that you ALL have been through, I know I was right and Thankfully I DID have a Gastroenterologist that back in 2009 KNEW A LOT more than Most Other dr's! BUT I DIDN'T listen to her! I did NOT take the BIG BOX of gastrocrohm she gave me because I'd just been through another "set of Scopes" endo and colon, and also swallowed that Camera Pill, and even though it all came back with what we already knew, the esphogeal problems I'd even forgot about until reading here, because she told me I needed to be on nexium rest of life, in hospital had found out back in 2005 they'd given me liquid Protonix and wanted me to be ON THAT TOO for life, for fear of more serious erosion...but between the HOLY INTESTINES and esphogus, and asthma and skin rashes THAT THANKFULLY for me GO away....I am Blessed there....my Main problems are the severe asthma problems, the severe pain, that seems everywhere BUT does feel more concentrated on my feet, ankles, and tops of legs but sometimes radiates to thighs, and my right hip used to hurt so bad I had thought for years...had to be BONE cancer...the pain was where I couldn't even stand for a Finger to TOUCH it, that now comes and goes, but that HOUSE Episode where the guy had masto? That made me THINK about ALL the syptoms including the running into a wall and feeling like I broke my arm...the pain that goes all over the body can last for weeks or months before it subsides, there is SO much on this forum to RELATE to, I certainly pray someday they'll find out what Really is going on for everyone here and all the others who are constantly being MIS-DIAGNOSED with everything from Eppstein Barr to CHRONIC Fatigue SYNDROME to Fibromyalgia, to? Lord knows what ELSE they'll Call it because NONE of these as far as I know have a cure...even the celiac my dr said the GI dr, that the real and ONLY test for that is when you have an endoscopy and they take a piece and look under the microscope..so MANY different "names" of diseases and syndromes and yet NO CURES?? So many also Seem to MIMIC more than ONE of these...just like you who said you have 2 auto-immune....I really wonder if ALL of this IS auto-immune? Somehow I believe this is all Connected...and pardon the pun on the conenctive...but what test can we get for those mass cells to show up in tissue? Should I go back to my gastro dr who IS the one who suggested I take gastrocrohm way back in 2009? Or should I go to primary and tell him to look and he'll clearly see ALL the things are related to my different diagnoses? He's a good one he's also the one who has tested my ana a bunch and also did the crp, for inflammation, and also the A1 tryptan deficiency? I think the spelling there is iffy? again, Thank You ALL for posting here. Debbie Ciolli