Forum Replies Created

Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
    Posts
  • in reply to: list of mast cell specialists? #775

    Irene Wilson
    Participant

    Hi you are asking about MCAS doctors. In the UK some doctors are not willing to make a definite diagnosis but are still willing to treat symptoms. We also have a few who are willing to make a definite diagnosis usually privately rather than NHS but this can be expensive if you don’t have private insurance.
    Finding an NHS doctor would depend on where you live. Are you able to say the nearest town or city to where you live and I can see if we have any NHS specialists near to you. If you are able to see someone privately we have two names I can give you both are in the London area.
    Hope you hear from you

    in reply to: Mastocytosis #771

    Irene Wilson
    Participant

    Hi from Irene
    The main thing you have a diagnosis. Many of us in the beginning see a Dermatologist, some see a Haematologist and some see an Immunologist. Its always helpful when you see someone who is treating other Masto patients and knowledgeable with the condition. The blood test might have been to check your Tryptase. Normal is up to 16 although many with Masto it’s over that. Sometimes if they are not too sure if it’s Masto a little skin biopsy would be taken of one of the pigment spots. It’s also important to have a bone scan called a Dexa Scan as Masto can affect our bones. Usually we would have a scan every two to three years. Quite a few of us are found to have Osteopenia which is the pre cursor to Osteoporosis and some do have Osteoporosis. Even with few symptoms it’s important to be seen by a specialist at the very least once a year. Some of us depending on symptoms of course are on a variety of medication. Usually this would include antihistamines and perhaps a mast cell cell stabiliser. It’s also important to use high factor sun cream and try and avoid the hot sun of the day. When having a shower keep the water on the cool side. Heat can be one of the triggers for us and at times our existing pigment spots can become more vibrant especially in the sun or while having a hot shower. I think your consultant will be waiting to see what your Tryptase level is. Do you have a follow up appointment arranged.

    in reply to: Welcome (Finally) to our forums #735

    Irene Wilson
    Participant

    Brilliant thanks Andrew for explaining – shows what a pea brain I have – I will blame Masto for having a foggy brain!

    in reply to: Welcome (Finally) to our forums #730

    Irene Wilson
    Participant

    Great to see the forums up and running. A definite huge job for everyone involved. Well done to our board for getting everything organised.
    Can I ask please what do all the little boxes at the top mean
    Eg /b. /i. /b-quote etc.

Viewing 4 posts - 1 through 4 (of 4 total)