larken
Guiding Light
 
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I Love YaBB 2!
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Yes, autoimmune urticaria can have similar symptoms because it can trigger secondary mast cell activation (different from chronic, primary mast cell disorders), so it is important to find someone who can think systematically to determine which it is.
I was actually diagnosed with this at one point because my most prominent symptoms were urticaria and angioedema. It was so easy for the doctors to SEE, unlike my GI issues, cognitive and mood problems, aching body, headaches, dizziness, near-fainting, exercise anaphylaxis and a million food triggers. All of those were invisible and tests came back negative early on, so it seemed like some doctors doubted that they existed.
I explained to the doctors that most of my symptoms started long before the urticaria and angioedema and they basically said, "We can't help you with those complaints, we can only treat what we see. You should go see a psychiatrist (ortho, rheumatologist, etc) for your other problems." I explained that I felt strongly that they were all related in some systematic way because they flared together. But, it was difficult for them to think outside of their specialty. The reality is, as you know, mast cell issues are just not not on the radar of most doctors and they treat what they know.
I even requested a specific mast cell med from an allergist who was willing to treat me for the urticaria to see if it would help my whole range of symptoms and he said, "No, I've never used that medication with patients before so I won't prescribe it." Argh! What if I am one in a million and this is the only medication that could help me? Does he just use the same 10 medications on people his whole career?!
Anyway, as I mentioned I finally found the doctor who understood how it all connected. Now that I am on the proper treatment for MCAS, my urticaria and angioedema are largely under control. Not surprisingly, I still have all my other mast cell symptoms, though they are much better, too.
Anyway, I would recommend taking the following to a first appointment to help your doctor in case she is not as familiar with MCs:
- a simple list of mast cell disorder symptoms with the ones checked off that you have experienced and the approximate dates that various symptoms began
- a list of tests that are normally prescribed for mast cell disorders
- the diagnostic criteria for mastocytosis and MCAS
- the study that I shared with you earlier on cognitive and mood symptoms
I have also developed a one-page list of triggers (food, alcohol, exercise, cold, etc) and usually shared that with doctors after they had the chance to review the list of common symptoms.
I always started with a new doctor by saying, "I am not a doctor and don't presume to know more than you about medical issues, but this is what my research has turned up and why I think that this is what I am experiencing. I am looking for a doctor who either knows about mast cell disorders and has treated them before, or is willing to think together with me in a systematic way, since this is a rare disorder and not many doctors, even, know much about it."
Hopefully your doctor can follow the diagnostic criteria to rule things out one by one and you can get to the root of the problem soon!
Good luck!!
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