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I have a new MCAS Dr!

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Strawberry, Jun 29, 2017.

  1. Strawberry

    Strawberry Senior Member

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    Seattle, WA USA
    Okay, he is my old allergy doctor, but I went back to him today after almost a decade. I found out he understands a good amount about MCAS and MCS, diagnosed me today with mild EDS, dermographism, and is talking about trying me on Cromolyn and Claritin (vs Zyrtec and Ketotifen). His nurse also walked me around the hospital campus for about two minutes monitoring my heart rate and oxygen. She knew how out of breath I was with little walking, and asked how I felt (which was muscles burning). So he knows how much the MCAS mixes in with the CFS.

    When he heard all the problems I have and how many medications I take just to breathe, he had his nurse do the allergy testing even though I am on my medications. So now I am crawling the walls and trying to scratch my face off from way too much histamine, but I have local support!

    I start shots next week. My CFS didn't improve while on shots before, but I was much more functional back then. If my allergies and MCAS/MCS can improve, maybe I can heal a bit and gain back 5%.

    And I have a LOCAL doc that UNDERSTANDS MCAS! :angel: If I could do a little gig, I would do that one where you click your heels to the side. :)
     
    Little Bluestem, bspg, leela and 12 others like this.
  2. Mary

    Mary Senior Member

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    @Strawberry - I'm very happy for you! Finding a doctor - and a local one to boot - who knows what's going on with you is like finding the holy grail! :thumbsup:
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    That is GREAT news @Strawberry and I am very happy for you! We are all so different b/c Cromolyn & Claritin did nothing for me and Zyrtec & Ketotefin were part of my winning combo. But we are all "unique snowflakes" as @Misfit Toy always says and I am confident that he will find the right combo for you. :star::star::star:
     
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  4. Strawberry

    Strawberry Senior Member

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    Claritin didn't work for me 20 years ago, but he says it works as an H1 and also works on another receptor (that I haven't heard of and didn't write down), so that is why he mentioned that. It may not work still, but he thought it might be worth trying again. (I need to research that receptor)

    Ketotifen seems to make my MCS worse when I have to take a lot, although I LOVE that stuff! I have no idea what Cromolyn does or if it will work. I think he just might be more familiar with that one. He nearly hit the floor when he found out I have ketotifen compounded locally, he thought it was illegal to sell in the states.

    And no I absolutely will not stop seeing Dr K also! He is the best!

    @Mary I love how you compared it to finding the holy grail! So true!
     
    Mary and Never Give Up like this.
  5. Gingergrrl

    Gingergrrl Senior Member

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    It's so strange to me when doctors do not know this but I experienced it as well. When I saw my MCAS doc, at the very first appt he said that you can get it compounded at any compounding pharm and I gave him my zipcode (b/c he is about 45 min south of me) and he listed three pharmacies from memory! I have an amazing compounding pharm who has created many meds for me including the Ketotefin. But many docs think that b/c you cannot get it at a commercial pharm like CVS, that it is unavailable in the US and this is totally incorrect!

    Agreed :star::star::star:
     
    Strawberry likes this.
  6. PDXhausted

    PDXhausted Senior Member

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    Hi @Strawberry - not sure if you've already answered this elsewhere, but did you end up trying the cromolyn and if so, how did it go?

    I'm waiting for my pharmacy to get it in stock so I can try it, and of course scouring the forum in the meantime to see how others have fared :)
     
  7. Strawberry

    Strawberry Senior Member

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    I haven't tried it yet. Best of luck and let me know how it goes if you try it too!
     
    PDXhausted likes this.

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