Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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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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    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. :)
     
  2. Mary

    Mary Moderator

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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:
     
  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.
  8. marlunette

    marlunette

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    @Strawberry

    I am sorry for reviving an old thread but I am looking for an allergist in Seattle that knows something about MCAS. Would you feel comfortable sharing the name of your doctor or suggesting a clinic?

    I have had a lifetime of mysterious reactions to so many things but because I don't react to IgE my allergist dismissed my concerns.

    Thank you!
     
  9. Mary

    Mary Moderator

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    @marlunette - I'm going to tag @Learner1 here as she is in the Seattle area (where I was born!) and knows some good doctors in that area.
     
  10. Learner1

    Learner1 Forum Support Assistant

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    I haven't had much luck with allergists in the Seattle area. Sounds like @Strawberry has a good one. Having my naturopath optimize my methylation significantly reduced my symptoms, but Dr K found that some of my symptoms were indeed related to MCAS through blood tests (prostaglandin D2 and chrimogranin A and he prescribed ketotifen and cromolyn sodium for every day and Benadryl if I need it. Quercetin and curcumin help, too.
     
    marlunette likes this.
  11. raghav

    raghav Senior Member

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    @Learner1 Is there any specific blood test(s) that will say positively that I have MCAS (or not). I would like to take it up with my doctor. Thanks.
     
  12. marlunette

    marlunette

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    Thank you @Mary and @Learner1 !

    I have been on Kaiser Permanente and their allergist was not helpful at all. Now that I am switching insurance I am looking for an allergist that treats MCAS and it doesn't look like there are many options in Seattle. I am setting up an appointment with a naturopath as soon as I get away fro Kaiser :)
     
  13. Strawberry

    Strawberry Senior Member

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    Sorry I'm late. I tried to PM you but it wouldn't allow it? Are you able to PM me?
     
  14. marlunette

    marlunette

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    No worries! I am glad you are here. I can't send messages for some reason. My privacy settings are set to accept conversations from members so I will keep poking around and see where I went wrong.
     
  15. Sushi

    Sushi Moderation Resource Albuquerque

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    You couldn't send private messages because you were a new member, but now you should be able to.
     
    marlunette likes this.
  16. wigglethemouse

    wigglethemouse Senior Member

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    @raghav You can read "Never bet against Occam" by Dr Afrin for lots of info on MCAS. Dr. Afrin is the one that pioneered the MCAS treatment field.

    Doctors could be referred to this paper, also by Dr. Afrin, where Fig 5 and the text following it details the blood and Urine testing along with special handling instructions.
    https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm
     
    raghav likes this.

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