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Just told mast cell disease now what to expect

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regina85298
regina85298

I have been searching for answers for over 2 years and was just told from blood and urine work up that this with symptoms looks like mast cell. I was put on zertec and zantec and suppose to go back in 6 months. I had severe flushing and hives on face and neck and heart racing, anxiety feeling all over my body, stomach pain,joint pain,diarrhea,and bowel problems, headaches, brain cannot think or concentrate,arms feel like weights tied to them, vision issues, tired, ringing in my ears and the list goes on. since I started the meds it has helped some especially with the flushing and hives. So now I don't go back for 6 months. What will we do at that appointment? I am thankful for this doctor but that is a lot to drop on you and wait 6 months to learns more. Any advise on what type or is there a underlying issue. Tested for many underlying but all negative. 😢

0 likes, 8 replies

8 Replies

  • cindy65527
    cindy65527 regina85298

    Posted

    did you have a serum tryptase blood test or a bone marrow biopsy??
    • regina85298
      regina85298

      Posted

      Thank you all for replying. I feel sick about everyday and it is very frustrating. I have always been very healthy and I guess I was expecting the meds to fix it all.
  • Vaxxine
    Vaxxine regina85298

    Posted

    Hi Regina, I had the exact same experience. Identical.

    I got the mast cell diagnosis, went back every 6 months for an office visit plus testing. You may be tested for IgE mediated allergies, tryptase, histamine, liver function or nutrition. Generally, at each appointment you discuss any issues, reactions or symptoms. You evalute how well your meds are controlling your symptoms. There are lots of different types of medications. It can take time to find the perfect fit for your symptoms so be patient. There is no cure, only managing symptoms and avoiding triggers once you know what they are. I go back in about a week. I'll have my regular tests done at that time.

    " I am thankful for this doctor but that is a lot to drop on you and wait 6 months to learns more."  ... I COMPLETELY agree. I was told nothing other than my generic diagnosis, given no information and sent home to take antihistamines.

    " Any advice on what type or is there a underlying issue. " ... There are tests to determine what type of mast cell issue(s) you have and disgnostic criteria to qualify for each from the World Health Organization (WHO). For example, a serum tryptase of 20 or more indicates mastocytosis. There are several types of mast cell disease.

    I'd love to know if there are underlying issues I could improve to help my mast cells behave. I am trying to explore that avenue currently.

     

  • nscott84
    nscott84 regina85298

    Posted

    I agree with the others, its usually for more testing. I had a tryptaze and it came back negative so I personally dont have concrete diagnosis but my antihistamine has been helping so much. I hope you find relief, its scary.
    • regina85298
      regina85298 nscott84

      Posted

      So the flushing looks some better since the zertec,zantec, singular, but this week he put me on gastrocom to try to help the diarrhea and the pain in my stomach and joints. I am getting a 24 hour urine catch and they are sending it to the Mayo Clinic to be tested. So I guess we wait for that to come back. I have never really been sick with anything so I am wondering will this eventually be balanced where you feel normal and can function back to normal?
    • regina85298
      regina85298 nscott84

      Posted

      Thank you nscott84 I hope that you find out more about you and are feeling well
    • nscott84
      nscott84 regina85298

      Posted

      I dont know if we will ever feel normal again per se. I still notice a difference every once in a while, it isnt as bad but I still get the GI issue and other symptoms. I am so thankful for the anti-histamine I am on because I would pass out every time. I had a degranulation event last night and my stomach is still sore and I feel like I have arthritis all over my body. So I guess to answer your question probably not but it gets a bit better.
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