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Hi Therese, Thanks so much for sharing your symptoms, treatment, and experience with all who may be reading.
Let me know if you have any ideas for me to spread the word! Jess January 23, at 7: Thank you for starting your site and allowing us to comment.
It took me close to two years, with 21 rejections from physicians, to get the help I needed. It is very common for many of us to take as long as 5 to 10 years before we are diagnosed. It requires a lot of research on the part of the patient and the willingness to be our own best advocate.
My mast cell meds include: Nexium, Ketotifen, Gastrocrom cromolynPepcid and Xanax yes, we have benzodiazepin receptors as well! At all times, I carry: Afrin and I also see Dr. We can feel very alone and frightened when our bodies start to do some pretty strange things!
So come and join us if you need support or answers to some of your questions. It is a special group to be a part of.
In other words how chronically, in what quantity, and what specific powerful chemicals are being released from our mast cells when they degranulate. There are those with MCAS that can go into anaphylaxis 1,2,3 or more time a day. And there are those with ISM who die of other causes, never even knowing they ever had a mast cell disease.
This is not a disease that we can handle on our own, it is a disease we need to share because there are only a handful of experts who can help us and there are sooo many of us!!
I would like also like to add a bit to your reference about medications and diet. Often times when many of us with a mast cell disease react to a medication, as Jess explained above, we need to compound that medication to see if it is the medication itself that is causing us to react.
We often find, it is the fillers, dyes, and preservatives in the medications that are what are causing us to become symptomatic. It can be the same for us with foods.
So it is critical if you are just starting to become symptomatic, to start a daily journal. Write down the foods you eat, when you eat them, the amount of sleep you get, the activity level for that day, what meds you took and how you felt on that day.
And when I talk about symptomatic, I mean anything from getting hives, to being itchy, to going into life threatening anaphylaxis. This is a chronic disorder and there is no cure yet.PLOS Biology provides an Open Access platform to showcase your best research and commentary across all areas of biological science..
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