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Doctor suggested Mastocytosis. Anyone?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by MNC, Jul 14, 2010.

  1. xrayspex

    xrayspex Senior Member

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    oh i will read that toronto paper, looks good, there really is a lot of sexism and discrimination with these health issues still!
    does anyone know if someone can have mild case of this where dont get anaphalyctic shock or have to do er visits for life threatening things? just feel crappy and debilitated a lot with headaches or food sensitivies etc?
  2. xrayspex

    xrayspex Senior Member

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    doing some research on line and "claritin eye" eyedrops, couple other similar brands have ketotifen which is a mast cell stabilizer....wondering if this would be good route to try especially with multiple chem sensitivity

    also learned that zyrtec is less drying than benadryl

    I have both the dry eye stuff (sjogrens) and allergy type stuff and sleep problems so zyrtec or its called Cetirizine HCI and you can also find this over the counter, may be good alternative--I currently take benadryl to sleep and help my sensivities but its making my dry eye a lot worse, zyrtec can be drying too but supposedly not as bad.

    its hard to treat this stuff cus you take one thing for one symptom as you know and make another worse. that dr. theoharides sounds great one of you posted about him, may try his supplement. i do take quercetin on its own already, i think it helps alittle but sometimes drops b/p more which i dont need.
    I also read that seabuck thorn oil is an omega 7 good for sjogrens and dry eye, may look into that.

    very excited to be learning about autoimmune stuff finally, was dx with rosacea at onset of cfs but no one has ever explained all the issues that can be tied together under autoimmune stuff and cfs/fm! no one at a clinic i mean.
  3. taniaaust1

    taniaaust1 Senior Member

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    Im certainly no expert on the illness but as far as Im aware one may have a milder case of it, my uncles case is just a severe one.

    Its like ME/CFS ..some cases are progressive, others arent.
  4. Gavman

    Gavman Senior Member

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    I think there is a potential that part of the CFS issue is connective tissue problems. It makes sense to me that if the connection between the brain and say, the ears or eyes takes time to get through, then that would impact us with noise/light sensitivity. I'm also quite impervious to pain, not just because i do martial arts but i think its not a healthy thing.

    Obviously if my system has shut down a bit to conserve energy or i'm -slower- than others, then that would effect this. But also that i've probably been in alot of pain and become number to it. Sometimes i think the body can shut down the pain centre, especially when the pain has been long-term. (as we are all different, it becomes harder to measure constant day to day pain)
  5. xrayspex

    xrayspex Senior Member

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    gavman, I am envious as pain is one of my main complaints, as long as I dont do anything or eat the wrong thing or get exposed to wrong chemical I might be painfree, but hard to be perfect every day that way....
    its frustrating cus before this "affliction" I worked out all the time and there were no bad pains i couldnt deal with, I couldnt have imagined this at all from my life upto age 29. thats why its so weird....even tho its been many years now since then I can't get over it, how profound the pain can be and provoked by so little, when I used to be able to work all day, lift weights and jog and then dance all night and give a friend a piggyback ride no problem, was so fit........something went terribly wrong and it feels like mainstream medicine is in dark ages to have no good answers for me yet. grrrrrr
  6. MNC

    MNC Senior Member

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    I forgot about this thread ages ago.

    The neurologist sent me to an "expert on Mastocytosis" colleague who was a dermatologist.

    He saw me, he checked my back, my skin, decided I had no dermatography and sent me home...

    This is all a joke.

    For some time I still had this in mind and thought of trying to find some other expert, but in time I forgot, since I am just exahusted of checking so many rare illnesses for nothing.

    Wha I know for sure is that if I did have Mastosomething, that expert guy couldnt tell by his funny examination.

    Cheers.
    taniaaust1 likes this.
  7. nanonug

    nanonug Senior Member

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    You need to test urinary N-methylhistamine. This will tell you whether you have some kind of histamine overload problem or not.
  8. xrayspex

    xrayspex Senior Member

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    the other day when i posted this I did a bunch of research and came to conclusion that if I responded well to a mast cell stabilizer it could be enlightening. I am really chemically sensitive. after googling around I got the idea to try Alaway eye drops, its ketoifen, a mast cell stabilizer, (hard to get mast cell stabilizer meds in nondrop form without prescription). since its eye drop I like that idea witj my mcs chances are it would effect me systemically. but also safely (I hope) minute amount. trying it a little, it might be helping a bit, too soon to know, will keep ya posted. dont need script for eye drops.
  9. chilove

    chilove Senior Member

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    Hi there,

    I;m very curious to hear what happened with the ketotofin. I recenlty heard about it and am trying to get my doctor to write me a scrip for it.

    Thanks!

    Audrey
  10. xrayspex

    xrayspex Senior Member

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    Audrey, I have to dig up my journal notes about what specifically happened with those drops, but the gist of it was that I didn't like how I felt taking them. I did get some systemic effect but side effects too I didnt like I just don't recall what they were. But I stopped taking them as a result :(

    but I am unusual, I get negative reactions to a lot of things and in very small doses. challenging. I would be curious tho if you try it or if others have since then and can report back.
  11. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Hi, you can find a posting somewhere here by yours truly of a study that said that quercetin was superior to ketotifen.

    Walgreens has the ketotifen eyedrops, btw.

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