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Posts (18)

Sun, Feb 10 12:12pm · Mast Cell Activation in Blood Cancers & Disorders

I pretty much have a horrible reaction to any pill. Stress really sets it off bad. I also feel like my rash gets worse if I eat junk food. I wish I could hurry up these Dr appointments. At least now I’ll have something to tell my gp and maybe she will take me seriously. I think I’m going to have my dermatologist get another biopsy of this rash. I am hopeful now though. I’m 99.9 percent sure I have a mast cell disorder.

Sun, Feb 10 8:04am · Mast Cell Activation in Blood Cancers & Disorders

The more I think about it there have been lots of subtle signs. I’ve had acid reflux disease since I was a kid. I had Athsma as a baby that went away. I would randomly be allergic to my wedding ring. I’ve had a weird rash that popped up on my leg from exposure to the sun that went away. Ever since I can remember when I drink alcohol my uvula swells up. I just never realized MCAS was a thing and I think a lot of drs don’t know enough about it.

Sat, Feb 9 8:44pm · Mast Cell Activation in Blood Cancers & Disorders

No my dr. Insists it is due to anxiety because all of my tests come out normal. I know it’s really happening so it’s frusterating. I made an apt with an immunologist recently so I’m hoping I can finally figure out what is going on. My wife has been dealing with me freaking out over health stuff for two years now. I’m so tired and frustrated. I am a little hopeful now because I feel like I’m on the right track. All it took was for me to take some medicine and I flushed and broke out in a rash. I’ve had a rash for months now. When I couldn’t breathe I started really researching. When I take Benadryl I feel like I can breathe. Hopefully I can finally get some answers and move on.

Sat, Feb 9 4:29pm · Mast Cell Activation in Blood Cancers & Disorders

I started to feel the same way the other day. I feel like my personality is gone and I’m just floating by. All I can think about is the fact that I can’t breathe or function. I really hope a dr can help you out soon. I’m hoping the same for myself. My wife hates me now because of all of this health stuff.

Sat, Feb 9 3:23pm · Mast Cell Activation in Blood Cancers & Disorders

Yes I read that too. I have been super dizzy and out of it this whole week. My symptoms seem to alternate too. It is super frustrating. I just want to function a little more normally again.

Sat, Feb 9 3:21pm · Mast Cell Activation in Blood Cancers & Disorders

Thank you for the reply. I will ask that. At least it will probably answer why I’ve been so dizzy and Out of it for the last two years. All the negative tests and different specialists I’ve seen. It’s been so frustrating.

Fri, Feb 8 4:59pm · Mast Cell Activation in Blood Cancers & Disorders

Yeah I have really been struggling. I am an avid weightlifter so the breathing thing is hard. I just did a hard workout a couple of weeks ago and I could barely breathe at the end of it. I’ve never had that reaction to a workout before. I’m freaking out that this could be full blown madtocytosis or mast cell leukemia.

Fri, Feb 8 12:00pm · Mast Cell Activation in Blood Cancers & Disorders

I have had a rash for about 6 or 7 months and the doctors can’t figure out what’s going on. This year I have started almost having constant asthma like symptoms. I’ve also experienced headaches, diziniss and occasionally episodes of random diarrhea. The drs told me it is anxiety. I am now thinking I’m losing my mind because I know these symptoms are real. My symptoms seem to get worse with stress. I scheduled an appointment with an immunologist. I also had a biopsy come back as a drug rash so that makes me wonder if something more is going on. My symptoms seemed to get worse after drs kept prescribing me antidepressants which I reacted horribly to. This situation sucks. I’ve also been having episodes of numbness in my face, tongue and hands and feet. I am over this nightmare.