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Appointment regarding MCAD with Dr. Afrin 1/26/17

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Lynn, Jan 26, 2017.

  1. Lynn

    Lynn Senior Member

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    I will be seeing Dr. Afrin tomorrow for my first time to evaluate me for MCAD. I have been waiting for this appointment for 9 months after reading his book last year. It's hard to imagine how much I want the tests to show positive (which seems really weird). But after decades of ME/CFS I would like to have a diagnosis for which there are treatments!

    I'll post again after the appointment. If anyone has advice for me please feel free to share or PM me. I don't know why I didn't think to ask for advice before.

    Lynn
     
  2. Zombie_Lurker

    Zombie_Lurker

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    Let us know how it goes! I just started reading his book this week.
     
  3. Lynn

    Lynn Senior Member

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    The appointment went well. He wanted a detailed account of symptoms from early childhood. I think his theory is that MCAS symptoms start early even if they are not noticed at the time. Other than that it was a typical doctor's visit.

    I asked him if he had examined an ME/CFS patient that did not end up being diagnosed with MCAS. He replied that he had not. The diagnosis is not clinical. They are running a bunch of tests on my blood and I have to do a 24 hour urine test starting tomorrow. The tests must show signs of mast cell activation.

    I probably won't see the results for about a month but I will post when I get them.

    Lynn
     
  4. eljefe19

    eljefe19

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    Do my other MCAS people get absolutely horrible stomach cramps? I just got diagnosed with this at OMI 10 years after it being diagnosed IBS.
     
  5. ryan31337

    ryan31337 Senior Member

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    Yes, very common symptom amongst sufferers. Afrin talks quite a lot in his book about stomach biopsy being diagnostic for MCAS, but its all very contentious and the dermatologist I see suggests you'd see elevated numbers of mast and other cells simply due to inflammation from other causes.

    Have they suggested any treatment for you @eljefe19? Antihistamine H1/H2, anti-leukotriene, ketotifen & sodium cromoglicate are useful starters for most.
     
  6. eljefe19

    eljefe19

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    Haven't gotten my MCAS biomarkers back yet, but my intense stomach aches went away 95% with a regimen of Ketotifen, Ebastine (H1), Ranitidine (H2), and Mesalazine. I am considering adding a beta adrenergic agonist like Fomotorol as this stabilizes mast cells and quickly.
     
  7. ryan31337

    ryan31337 Senior Member

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    That's good news, congrats. When you say 95%, do you mean severity or frequency? If its frequency I'm curious if you know what triggers the 5%?

    I've managed to get my postprandial bloating/cramps/diarrhoea down to a minimum through restrictive diet & the antihistamine/antileukotriene combo. Unfortunately as soon as I go beyond my baseline and overexert they flare right up again for a few days, despite keeping to the same 'safe' foods :thumbdown:
     
  8. Fogbuster

    Fogbuster Senior Member

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    Hi Lynn,

    How did your trip to Dr Afrin go?

    You're about 9 months ahead of me in my journey i'd say. Your post resonated with me, as i'm sure i'll be going through the exact same emotions when I see him in the not to distant future. I've just started getting back into MCAS research after failing a diagnosis 2 years ago. I had my tryptase & histamine levels checked, along with maybe one other test, the tests came back as normal...

    I knew at the time getting a diagnosis for it could be quite hard, but I had no idea how complicated the route to diagnosis was going to be for some of us! I've just recently read a few parts of his book and came across his section about idiopathic nosebleeds.

    I had my nose quarterized three times from the age of 11-15, I feel that's quite unusual. I also used to have quite a lot earaches, problems going even 1m deep under water without ear pain. The latter seemed to reduce quite a bit as I got into teenage hood.

    Although one of my annoying symptoms now is constant fullness in ears 24/7, even when I pop them the pressure remains. Just thought I'd mention this, just in case you've experienced anything similar or you got a nugget of info from Dr Afrin... :)

    Hopefully hear from you soon.

    regards,
    Jamie
     
  9. Lynn

    Lynn Senior Member

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    Hi Jamie,

    All of the tests came back normal. I chose not to get retested. Dr. Afrin is leaving the Univ. of Minnesota so it looks like I will not get a diagnosis of MCAS.

    The good news is that I have been doing the antihistamine 1 & 2 protocol since January. I take 1 generic Zyrtec and 1 generic Zantac (from Costco) each morning and then again at night. My sleep patterns have totally changed since starting the protocol. I used to get up at about 11 am each morning. Now I wake up around 7-8 am. It's amazing to have so much more of the day. Other than sleep, I have not noticed any other changes in symptoms.

    I am sorry to have not got the diagnosis. I think I would have benefited from some prescription MCAS drugs given the improvement in sleep. Dr. Afrin was not willing to prescribe anything since the tests were negative. I didn't realize how slim of a chance there was to get a positive result when I started the process.

    My right ear pops every time I swallow. It's been that way ever since I can remember. I developed allergies at about 15 years old and have been taking antihistamines since. I also have a problem with flushing. I think many of us with ME/CFS have those issues as well.

    One thing Dr. Afrin did tell me is that if I was able to trial prescription drugs, I would definitively know when one of them worked. I have tried dozens of things for ME/CFS and didn't notice any great results except the antihistamine 1&2 protocol.

    I'm hoping Dr. Davis or the Rituximab study comes through and we have more hope for the future.

    Lynn
     
  10. Fogbuster

    Fogbuster Senior Member

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    Hi Lynn,

    Thanks for your response. I'm sorry you didn't get your diagnosis! As I'm sure you're well aware, that shouldn't stop you from giving the medications a try if you feel they may help you.

    I've tried to google search it, but can't seem to find it. Could you possibly link me to the antihistamine 1 & 2 protocol? Also if you don't mind me asking, what was the cost and waiting time to see Dr Afrin? Rituximab is a drug I've had an interest in, but I think its something to consider way down the line for me at least.

    When you say "I didn't realize how slim of a chance there was to get a positive result when I started the process." Do you mean that most suspected MCAS patients don't show signs of MCAS when tested by him?

    I'm sorry to ask you so many questions!

    BW,
    Jamie
     
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