Mast Cell Activation

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.

Hi @jpearo. I also have asthma like symptoms that have gotten progressively worse over 6 years. Then I started getting the flushing on the face and I’ve have reflux for years. All symptoms of MCAS, although tested negative for blood tryptase and histamine and prostaglandins in the 24 hour urine, probably because I take NSAIDS. Anyway, I just read a research article by researchers at Harvard on diagnosis and symptomology of MCAS. All the symptoms you describe were listed in the article. Go http://www.tmsforacure.org for more info. I lived the nightmare for years and continue to have breathing problems even though I have a diagnosis. We are working towards getting them under control so
I am hopeful that day will come. It sucks not being able to breathe especially since I am distance runner and tennis player. I keep going though, one day at a time. I have a great psychologist who has helped me through major depression episodes and continues to support me emotionally. An immunologist should be able to help you and I hope the one that sees you knows about MCAS, which they are finding is not that uncommon. But doctors need to rule out other diseases as the WHO criteria for MCAS is very specific. I don’t fit their criteria but I responded to the treatment. I hope you get some answers soon so you can begin living a better life again.

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.

@jpearo you can ask an allergist to check your tryptase level, that would rule out mastocytosis.jpearo you can ask an allergist to check your tryptase level, that would rule out mastocytosis.

@leilanis How were you able to get a diagnosis? My family and I have been trying to find a diagnosis for the past three years, especially because every flare is worse than the last one. I have developed six new food allergies since july and my environmental allergies have gotten worse as well. We've eliminated every other disease that could be causing my symptoms but my allergist doesnt want to give me a diagnosis since my 24 hr histamine level came back normal as did the kit mutation even though I have responded to medication (It doesnt reduce the amount of reactions during flares but it does increase the amount of time I can be around my triggers and makes my reactions less severe).

The good news, mast cell leukemia is very rare according to the research I’ve read. My breathing gets bad to the point that I am sitting in he ground trying to get a breath in during my tennis lessons. I’m good for a few months then I will get a “flare” and I would have to use my rescue inhaler 3-4 times in a one hour lesson. I haven’t let it stop me. However I just partially tore my Achilles’ tendon, most likely secondary to side effects of meds I’ve been on, like prednisone, Celebrex and Cipro. So it’s always one thing after another but I am not willing to let it stop me from doing things that were and are really a part of me — we are a really active family. I learned to snowboard two years ago even though cold often makes my breathing worse. I have doctors that understand that sports are a huge part of who I am and they help me stay as active as possible. I think it’s part of stubbornness (I like to call strong will 🙂 ) that keeps me going. Although sometimes i pay the price, but every athlete does. Ours is just diffferent.

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.

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.

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.

@jpearo Are any of your doctors treating the breathing problems? Like with inhalers or steroids? Regardless of a diagnosis, they should still be treating the symptoms, which they should do even if you have the diagnosis of MCAS. I was treated for “asthma” at the very start of my “not sure what is wrong with you” journey. Everyone thought it was asthma even though every pulmonary function test came back negative. I kinda always doubted that I asthma because my symptoms didn’t fit other than the fact I couldn’t breathe. I’m sorry your wife hates you because of your illness. I’m sure she doesn’t hate you, but she hates the illness and what it’s doing to you. I would urge your doctors to help manage your symptoms so you can Live day to day better as they try and sort out a “diagnosis”. I was very depressed (and still get episodes of major depression) in the beginning so I eventually gave in to taking anti-depressants and went to see a
Psychologist. It helped me sort out my feelings talking to someone. Is there anyone you trust that you can talk openly with? Maybe share what you’re going through with your wife so she can be more understanding of what you’re going through. Maybe you’ve already done that. It’s still hard though. I have had suicidal thoughts that come and go. When you don’t have control of your body, it’s a really tough, hard place to be and sometimes our relationships suffer because of it. I found it much better once I shared with my husband exactly what I was feeling and going through each day. I hope your dizziness gets better and you can think more clearly. I try to find something good in each day or do something that makes me feel like the old me.

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.