Please help - Mast Cell Activation Syndrome (MCAS)

[allergyupset]

Can anyone please recommend a female doctor in London who can diagnose Mast Cell Activation Syndrome? Preferably a private doctor as my GP won't refer me to anyone. (I've been advised by a few people online that you should never specifically mention MCAS to your GP as a lot of doctors don't accept it).

I saw a doctor a couple of months ago who said she wanted to test me for it, I've had problems for years and suddenly it all makes sense, but for complicated reasons I'm unable to see her again. I'm not going to discuss why so please don't ask.

For anyone who doesn't know, there are very few doctors who actually deal with it and it's very hard to get diagnosed, so please, no "Have you tried seeing a dermatologist?" comments, I've already been there a million times so that's why I'm looking for an exact recommendation.

I'm looking for a female doctor and this isn't negotiable.

EDS UK may be able to help you. My dd has this but her consultant is male.

Dr Tina Peers

Thank you both, Dr Peers certainly looks promising. I never thought of contacting EDS UK as I don't have EDS but it's a good idea, thank you.

I have this. What are your symptoms ?
Dr Peers was not taking new appointments when I tired

@Cuntingseal Who did you get diagnosed by?

I don't have the energy to discuss my symptoms on here.

I just phoned one of the places where Dr Tina Peers works, the guy on the phone didn't know the situation if there's any appointments or not so apparently someone will phone me back later.

I am absolutely desperate. I can't take any more. I've been all round the houses for several years now with being ignored by doctors, being told there's nothing wrong etc. As soon as I find out what's wrong, suddenly the nice doctor can't do appointments any more. My GP just views me as a mental health patient and is totally uninterested.

I have this also . My symptoms are anaphylaxis mostly and I had a wonderful GP with an interest in allergies who said she thought I had this .
I paid for private allergy tests before the diagnosis which were all clear . I was then referred on the NHS to an allergy team who diagnosed idiopathic anaphylaxis as they don’t like to use MCAS term in this county it seems . I am having treatment which has helped a lot but am still trying to find my triggers.
I also tried to get a private appointment with DR Peers but couldn’t even go on a waiting list .
I was lucky I was seen urgently by the immunology / allergy specialist
Can you try a different GP ?

I already changed my GP last year.

I've been advised by a charity that I shouldn't ever specifically mention MCAS to my GP because apparently so many doctor don't believe in it that as you soon as you mention it by name, it's apparently game over? So I'm having to tiptoe around the issue in a really inefficient way.

I've already been seen by several allergy teams and all of them have dismissed me. The last one actually wants to refer me to a Psychodermatologist as they keep insisting I'm imagining things. I'm absolutely desperate and I don't know what to do.

I feel so ill and nobody will help me. My GP has basically written me off.

Are you in any MCAS Facebook groups ? I have found them helpful.

I think my symptoms sound different to yours and I have been hospitalised with anaphylaxis so I can’t comment on chronic dermatology issues as mine only happen when I am having an attack .

I am not sure what to suggest as my allergist was helpful and put me on a high fexofenadine which has helped me. I have been trying to find my triggers which has not been easy.
Do you have any meds ? Do you know what your triggers are ?

I have this and have received no help for it, Dr's look at me like I'm mad but I am unable to eat so many things now due to sudden violent attacks ranging from vomiting, rapid heart rate, chills, rigours and loss of consciousness to actual swelling of throat and face and neck and shortness of breath, luckily never bad enough that it's not subsided after a period of time.

I have awful skin issues with it too and random shortness of breath episodes. It's miserable but I believe I have EDS too as I have a lot of symptoms but rheumatology on the NHS don't want to know as there is nothing they can do for me.

@FlowerySusan I don't have any meds because I haven't been diagnosed. I can pay to see a private doctor but I literally can't find one. I was given a list by a helpful person but I've gone through them one by one and keep finding people who don't diagnose it any more, or who have a year-long waiting list etc. I know exactly what is wrong, just that I can't find anyone to continue the investigations.

Nothing useful, only sympathy. Fucking twatting drs dismissing stuff.

It has a name. It exists, so some poor sod somewhere has it....the is no reason why it shouldn't be the person standing in front of them...

(I might be slightly pissed off that it took me 30 years to get one of my diagnoses)

Yes this is what I'm worried about. I've already had at least a couple of years of being dismissed when I didn't know what was wrong. But now that I've found out about MCAS at least I know what I'm looking for, and I cannot spend thirty years looking for someone. My health had become suddenly worse over the last month or so and it's very difficult to find anyone.

I thought I had MCAS and struggled to be diagnosed but was then diagnosed with histamine intolerance and prescribed high dose fexofenadine which helps greatly
I still don't know for sure what it is tbh but am glad to finally get some relief

@ElmtreeMama How did you get diagnosed?

Yes I was told I have histamine intolerance too by the private allergy specialist but I believe the histamine levels in my body lead to the MCAS .
I was told by another allergy doctor that a low histamine diet is pointless and when I stopped it I had 2 anaphylactic reactions in 2 weeks. I am back on the low histamine diet and haven’t had a reaction for a month now .
@allergyupset I am amazed they have not prescribed you a strong antihistamine. I got mine from my GP and it has really helped. I have not been hospitalised since starting it.
I found the UK MCAS Facebook group very helpful so try that and ask for Dr recommendation.

@allergyupset
Tbh it was just my GP
I had allergy testing which showed I wasn't allergic to anything specific and I took endless photos of the various reactions I was having
As well as saying all the otc anti histamines weren't making any difference

I had MCAS recognised by a specialist cardiology department for PoTS - this can occur with MCAS and it was them who prescribed famotodine.
Mine was flared up big time by having COVID. Dr Tina Peers has established a link between MCAS and long covid so there is increased awareness (among the long covid community, at least)

Dr Tina Peers is a saint, I saw her on the nhs for something totally unrelated and she was just lovely. I assume it's the same lady, I always thought she was a gynaecologist. If it's the same person and you're able to see her then you'll be in very good hands.

Dr Florentina lindo wing - she was brilliant with me, her advice and a low histamine diet has really helped. (after being dismissed by countless GPS)

@bettybigballs How did you get referred? Or is she a private doctor?

Surely your GP would prescribe an anti-histamine for you?
Have you tried loratadine or cetirizine over the counter?
What difference would an official diagnosis make to your treatment plan? The name isn't important, just that you get the treatment you need.
If you have been admitted frequently with anaphylaxis, you should have an Epi-pen. Your GP sounds very obstructive.

@JMAngel1 Please don't start. Having a nightmare getting diagnosed seems pretty standard for MCAS. But in answer to your questions:

• I take Loratadine every day, and Quercetin
• My GP isn't interested in helping
• There are numerous prescription medicines available for MCAS including Ketotifen, Nalcrom and Montelukast. You can't be prescribed these things without being diagnosed. So once you get diagnosed, you get given the right prescription medicines which are not the same as antihistamine. This is the same situation for most chronic illnesses, you can't just buy them from a pharmacist.
• I have never had anaphylaxis. MCAS shows up differently in different people and it has many different presentations.

I don't have the energy to answer any more basic questions. I'm just looking for a doctor.

Dr Gall if you have POTS as well.
Dr Gall is UK leading pots expert and links to Mcas experts. Prof Khullar if you have Mcas bladder issues. He has prescribed me with loratadine, famotidine and low histamine diet. Dr Gall recommends expert in Leicester for MCAS (dr croom??)
Join the Facebook groups for Mcas.