Took me 2 years of convincing people and doctors I was sick. Now I look back on my life and realize I was sick before I even paid attention. I've been diagnosed with so many things. But mcas was the last thing.
PMDd, chronic fatigue syndrome, blood clotting disorder, anxiety disorder just to name a Few
Hypochondriac, Anxiety, Panic Disorder, a liar seeking attention, PMDD.
They tried to say everything was in my head and I have anxiety. Same with my vascular eagles syndrome. I proved them wrong in time.
I’ve had a lot of diagnosis in my life. Anxiety, IBS, IC etc. Those diagnosis appear correct but maybe MCAS a syndrome of many issues.
I think most people who have pursued a suspected MCAS diagnosis have been improperly diagnosed and treated at some point.
I was told I had food allergies until I was basically in anaphylaxis for like 2 weeks straight. The allergist I went too knew right away and confirmed with blood and urine tests.
Misdiagnosed with Fibromyalgia and given nerve blockers which sent me into anaphylactic shock.
Sphincter of oddi dysfunction, ibs but none of the meds worked. Nothing worked till the mcas treatment
I was told for about 15 years that I wasn’t exercising enough and that was the reason for all my problems (at the time, I had undiagnosed hEDS, MCAS, POTS, autism, PTSD, improperly placed surgical instrumentation, and more). I’ve also been told that I just wasn’t recovering from surgery very well.
I was told I had IBS, anxiety, and a somatization disorder for 16 years but it ended up being MCAS.
My daughter... global delay and autism. 2 months on mast cell treatment amd was discharged from speech and ot.. and no longer threw flags to early intervention and they corrected their findings
Took 10 years of numerous drs.
Asthma, allergies, eczema, karatosis, absence seizures, Multiple chemical sensitivity, chronic fatigue, checked for MS, lupus, pheochromocytoma, and yet not checked for mast cell. And like the majority here, every time something was ruled out, the answer was: oh maybe it’s just anxiety. Have actual PTSD, an anxiety disorder, and it has NEVER given me an allergic multisystemic reaction. The reactions are trigger led and anxiety has never been its driving factor or really even an amplifier. What turned the ship was when the tryptase came back high, then the HAT test, then the lesion on my face and the pathology results. And I’m still struggling to get things locked down. The degree of resistance to this is awful.
I’ve had so many tests, procedures, and seen so many different kinds of doctors that I lost count. I’ve had to do my own research and find a doctor to listen and actually test me for MCAS. I was diagnosed with POTS, but never thought that was really accurate because my heart rate doesn’t continue to raise when standing. It does go up, but levels out. I’ve been tested for seizures, Multiple sclerosis, pheochromocytoma, lupus, thyroid disease, Lyme disease, autoimmune diseases (MS included), cirrhosis, and more. I do have anxiety for sure, but now I wonder how much of the anxiety was caused by MCAS. I’ve had a family member call me a hypochondriac as well.
Anxiety. Even now I still have Dr's questioning it. I've had 7 episodes of full blown anaphylaxis in just under 2 years.
For over a decade I was misdiagnosed and I was probably sick for longer than that. I finally found a doctor that knows about MCAS and how to best treat it.
My current allergist is stripping me of all my MCAS meds, including Xolair. All in the name of not believing me nor my test results. I’m seeing my complex disease doctor, who is an angel and amazing, on Tuesday. I’ll see what he says and how upset he is with my damn allergist. I’m hoping he’s already spoken to another allergist to get my care transferred. I’m getting sicker the longer I’m off of Xolair and my other meds.