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Mast Cell Activation
Is there anyone that has MCA?,I live in Duluth and have just begun all types of testing for this nightmare (I.e. Blood test and bone marrow and 24hr Urinalysis)and they always come back negative in the since of trying to diagnose but I have been dealing with this since last year but didn't know what the heck was going on in my body.It started with just a skin rash at first but since last year till now I have developed allergies to foods I never had and now my body is so sensitive to heat change because within seconds my feet start tingling then swelling starts then my hands start swelling and the full breakout begins (niacin flush type feeling begins and doesn't stop)little scab like rash (like what fibromyalgia patients get)then the felling of vomiting begins.So I am so frustrated because all test keep coming back negative to get "DIAGNOSED"for MAST CELL to see how to treat it,even though I know that it is even the Oncologists and Allergist believes it is MCA so having to be my own advocate and research I have begun the "Low Histamine Paleo Food Change" But trying to cope day to day and for the most part living in my bedroom because I don't want to freeze out my wife or just feeling like my life is being robbed and my personality and to make things worse Dr.Afrin is booked out till 2018 and someone told me here in Duluth that is who you must see,so there goes that idea.I just sometimes want to give up because sometimes this Mast Cell makes you feel like you are loosing your mind.And I have no one to talk to that can relate to this,so there is my ramblings is there anyone who I can talk to that has this "CRAP".
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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.
@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).
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.
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.
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.
No.... just taking ibuprofen... which then hurts my stomach... I should ask...
Ketotifen is another mass cell stabilizer, like cromolyn. Have you tried it? Maybe that one won’t give the same side effects.
Did you ask your doctor about pain meds for your headaches? I have meds specifically for pain
My allergy pulmonologist is at a large university setting. There is a data base of physicians that treat Mass cell disorders at http://www.tmsforacure.org. It’s the website called The Mastocytosis Society. If you can’t find a specialist in your area, maybe you can call one of the physicians closest to you and they can refer you to a someone in your area. Every doctor has different training experiences, just like I am a physical therapist and I know how to treat certain diagnoses that another PT may not simply because my internships were different than theirs and I may have come across a patient with an uncommon problem, but my experience taught me how to treat them. Please keep looking for a doctor that can help you. I know it’s frustrating. It took me 6 years to get a maybe diagnosis. I was an addicted runner who ran 6 days a week, 9-10 miles. Having that taken away from me sent me into a major depression. Don’t give up even though this is the suckiest (yes, that’s professional jargon 🙂 ) disease.
So happy to know theres someone else with breathing issues too! I was starting to think it was all in my head since I dont get hives which is like, the number one sign you are having an allergic reaction. I was tested for asthma early this year because of my breathing symptoms, but I was found to actually have better than average breathing capacity (Im a tuba player), I think Im currently in a flare as well and Im just waiting for that to pass. I guess Im on a low histamine diet, simply because Im allergic to the foods that are high in histamine (dairy, egg, gluten, peanut, tree nuts, sesame seeds, soy, shell fish, coffee and anything with cinnamon makes me feel really sick) and I dont buy any prepackaged meals simply because I cant (although I wish I could because I absolutely hate cooking). Im really just hoping to get a diagnosis soon because I found that some people have started training dogs to alert when their mediator levels are rising and theyre about to have an allergic reaction. I currently have a service dog to help me avoid my dairy and gluten allergy and if I had that diagnosis I could start teaching her to alert to that. The dogs that have been trained to do this are able to give their handlers a 15-20 min warning, which hopefully is enough time to take benadryl in order to lessen the reaction (since thats how long it usually takes for benadryl to take effect). I will look into finding an allergy pulmonologist in my area, I did not even know those existed, thank you!