It's great to see our numbers grow here and I want to say hello to all the folks who have joined in the last week or so! A special hello to anyone who has joined since the conference at the weekend.
Please don't feel shy about jumping in. The way to make this a cosy and helpful community is to hop in and introduce yourself (no real names necessary) and tell a bit about why you're here, or to ask a question that you've been wondering about. We're glad you're here.
Jess
Thank you Jess ,l am a new member and very impressed with Health unlocked.
It is a great platform! I'm glad you're here!
Thank you Jess l am glad to be here !l get brain fog so it takes me a while to find my way around
l could blame my age ,but it's great to look at my own pace
and time.
Hi Jess got in touch with my Doctor 25th Jan 2021 had a chat over the phone aboutbeing Vaccinated and that l felt anxious about having the jabs he was helpful and
l have decided to have the Jabs so l Booked on line for the first Jab:4th Feb 2021
second Jab:23rd April 2021 both @9.10 am!
That booking took some working out on line!
l am going to keep a diary and record my reactions to the vaccinations will
take l 10mg of Cetirizine l hour before my jab l will be on low histamine diet
exercise in moderation and be sure to relax (got to look after my antibodies!)
Thank you for all the excellent information you give.
That's great news, Artwise! We look forward to hearing about your vaccination experience. Thanks for keeping track of how it goes for you! We will be launching a survey soon so you can also record that info there, if you're willing. Many thanks, Jess
Hi Jess yes l am willing to take part in the survey.
Just saying hello to everyone. Just signed up to Health Unlocked following recent conference.
Just introducing myself. I have previously been a member of Masto group but lost contact for a few years. Recently rejoined for conference and grappling with the ins and outs of COVID vaccine. Have MCAS (not proven) approaching 9 years and accommodate my condition reasonably well with ongoing challenges along the way. Good to be back in touch again with the group!
Glad you've found us again. Do take a look at the vaccine statement from a group of our medical advisors if you haven't seen it yet. I hope it may be helpful in thinking through your particular situation!
Hi Jess, and everyone,I have indolent systemic mastocytosis, and am still going through the very slow process of having various tests done to see what's going on. I first went to the GP about the lesions on my thighs 14 years ago, but didn't get a diagnosis of UP until three years ago and ISM last autumn. I'm really glad to find this group as I've been feeling very isolated and lonely. I'm really looking forward to joining discussions here.
Hi Garden! I'm really glad you've found us. I'm sorry it has taken so long since you started getting your skin lesions to get the diagnosis of UP and now ISM. I remember finding my first other patient with ISM and it felt like such a relief to have someone to share experiences with. Please don't be shy about asking questions and joining in with what kinds of things help you (or don't). Hoping that you've now got epipens prescribed, as all adults with mastocytosis should. And on our website ukmasto.org is an anaesthesia protocol that should be shared with the doctors if you were to ever need anaesthesia. (Most folks do fine with anaesthesia, but some don't, so it's better to prepare properly!) Welcome!
Hi Jess, thanks so much for your lovely reply. Yes it feels great to have found this community and be able to talk to others who understand about mast cell diseases.I am luckily now with a really good haematologist who has been moving everything along, and has made sure I have all the protocols to show to medical staff when necessary. I also have epipens. I am also lucky to have a good dermatologist who diagnosed the UP instantly and stated the ISM investigations after checking my tryptase levels.
I'm currently in the process of having gut biopsies, abdominal scan and the dexa scan has shown osteoporosis. So I'm looking forward to asking people here how that has been treated, and for any advice. It feels like I'm finally getting somewhere and although it's not all good news, it's better to find out and start treating it all.
Thanks for running this forum; it's making a big difference to me.
Could MCAS a possibility?
Help please. MCAS investigation on the NHS?
Might I have Mastocytosis rather than MCAS?
Sodium cromoglicate - GP won't supply any more