New Life?

I was diagnosised with systemic Mastosytosis a few months ago after having my 1st flushing episode.  I was home alone with my 2 young kids and didn't know what to do.  After a series of blood test and a bone marrow biopsy, it was confirmed I have this disease.  My doctor thinks I've had it for a while.  I'm not sure of my triggers yet, but I take a Zrytec every day to hopefully avoid them.  I get boughts of lightheadedness almost every day, but this is my only symptom.  I feel fine almost all of the time.  I would love to chat with others with this rare disease. 

ajjb1020 ajjb1020
36-40, F
4 Responses Feb 21, 2009

I'm new here. I see some of the dates people posted are old. Not sure if they still are following there posts. I have Masto and just in the beginning phases of narrowing it down to which form. Before testing because I was told by the Mast Cell Specialist that he was confident that I had some form of MCAD. I get my final tests in two days. I have so many symptoms going on that when trying to list them I forget some. The major ones are bone/joint pain, degenerative disk, headaches, vision changes/problems/dry/ hot/ itchy eyes, rosacia type rash on my face, sore mouth and tongue/ an almost constant lump in my throat, chest pains, shortness of breath, lightheadedness/near fainting, Low BP, abdominal cramping, diarrhea, stomach pain, GERD, frequent urination and UTI's, hives, rashes/wheels on arms and neck, Raynauds, Tachycardia, Heart palpitations, fatigue, concentration problems and memory problems, sore/painful lymph nodes ......oh there's just so much. I'm sure there will be more tests to have done. I also chat on another forum where I've learned SO MUCH on this disease. I've also found some good articles by doctors that are recent and not out dated online. The really are working hard on researching Mast Cells right now. It's taken me years and years and way too many doctors to count to finally get a diagnosis. Now I can start my journey to getting better and hopefully getting some of my life back.

I was diagnosed last year with masto, but my doctors have not narrowed it down to what type. My rheumatologist has consulted with Dr Castells, due to the fact I do not have any spots or lesions, just elevated tryptase, anaphylaxis shock, gastro track issues, brain fog, headaches, low to high blood pressure, increased heart rate, flushing, & breathing difficulty. Since I do not have any skin issue, I am a new case to my doctors, and living in Alaska I do not have a lot of access to great doctors on masto. I carry my medical records with me, 4 epi-pens, anti-histmaines, nebulizer, and rescue inhalers (I also have asthma). I am on just about every known H1 or H2 blockers, gastrochrome, singulair, spariva, prilosec, advair disk, albuteral and combuvent for my nebulizer.

One of my biggest trigers is kiwi. I have a severe allergic reaction to any product that has kiwi in it or the fruit itself. I have less than 5 minutes to get to the ER, and that is using the 4 epi-pens. Just in the past two days I have had a reaction to preservatives in food as well.

I would love to talk to others that have Masto as well. Having someone else know what you are going through would be a great resource/support. Explosive70

I am just being diagnosed now after the rude awakening of an unexpected anaphylactic response while driving on the highway w/ my daughter. Barely had time to pull over and tell her to call for help before I was unconscious and nearly died-1 week in hospital and now home w/ 4 epi pens, pepcid, tons of allergy meds that are barely taming my symptoms (mostly runny nose, cough) and breathing treatments....marrow biopsy next week to be classed into a category, no markers or indicators previously and I work in a hospital in a fairly stressful job. I have just found the mastocytosis society website today and printed off emergency treatment protocols to assist with the next go-around I am assuming I will have...doing OK so far but my family is pretty freaked out. I was previously healthy. I am still taking it all in.

my daughter is 3 .. has up and sm.. she suffers from the flushing the bone aches the stomach issuses the loss of attention the staring spells anaphlatic shock the siezures .. you name she has it .. shes one hell of a trooper for what she goes through..

Hi! SM & UP here. I was diagnosed in February 2009 after years of idiopathic hives. I also get brain fog and the occasional gastric issue.<br />
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Robin, has your fiance had a dexa scan yet? If not, he needs to get one to make sure he's not suffering from osteoporosis (which is very common as the mast cells can eat away at the bones). <br />
<br />
I've heard that gastocrom, in addition to being great for brain fog, helps with bone pain.

My fiancee had had masto for over 20 years. He itches but other than that does not have many symptoms. Sometimes, a high fever that passes. We would love to learn more about your experiences with this disease. Oh, does anyone experience joint pain? Any remedies for that?