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.

forums.phoenixrising.me/forums/mast-cell-activation-syndrome.126/

My son has MCAS. GP states she has never heard of it so 'it is not a thing and you are not having a referral'. He is 21. He has long covid now 18m in. Post covid symptoms are palpitations, GERD, vomiting acid, sleep disturbance and inability to regulate body temp. Cardiology dept post covid are the only docs who have taken MCAS seriously and note he has all the symptoms but it is hard to get it recognized and hard to test. Covid has adversely affected his autonomic system. I think covid impacts mast cells thereby compounding existing issues. Covid will cause a strain on immunology services and any access to MCAS diagnosis for years. However maybe in will also increase awareness of it's existence and research over time. Low histamine diet is needed but my son does not stick to it. Also H2 inhibitors for gastric symptoms. We have epipens for anaphylactic episodes but it was a real battle to get them.

@Namechange600 Thanks but I'm specifically looking for a female doctor. I'm not prepared to deal with male doctors any more.

I was tested for this - through the Allergy Clinic (NHS) at St Thomas - many of the doctors there have private practices too. Gideon Luck is a name that comes up a lot as great for private care.

You could also try Dr Sharleen Hill at Royal Free (dermatologist)

Just an update on Tina Peers - I got a call to say that she isn't taking on new patients at her Central London clinic, but I was advised to try calling her Surrey clinics as there's still a chance she might be taking on new patients there, although I'm not sure yet.

My consultant is leaving the NHS
I discussed it with him nut mine is cholinergic and spontaneous urticaria, I'm on Xolair
Fexofenadine, montelukast etc all tried previously
I get it

@NotMyCat He is going private, or is he leaving medicine altogether?

[quote allergyupset]@NotMyCat He is going private, or is he leaving medicine altogether?[/quote]
Private, he's NW based and cutting his NHS work to focus on clinics privately
He's the only one that suggested Xolair after I've had 25 years of hives

Is your GP able to continue prescribing it for you?

He's passing me to another consultant, I actually had an appointment this morning! My local trust doesn't do Xolair so I'm under another area (all telephone appointments) and he's said they're happy to continue prescribing because my quality of life without it is so bad

I am interested in this as I think I might have something similar. I have some hypermobility, but never actually went for a diagnosis, though the physio thought I probably had EDS.

I was referred to a dermatologist, and without any further diagnosis, was then able to get the GP to prescribe Montelukast, Fexofenadine, and higher doses of cetirizine (though I stopped the higher doses eventually as it was giving odd liver function tests). I also had H2 antihistamine in the form of ranitidine, but that has now been discontinued and I've not been offered anything to replace it, although so far I'm OK without it. I had unexplained intense itching, dermographia, blotchiness/flushing reactions.

I'd be interested if there are alternatives to ranitidine that are available.

@PeppermintMocha I have dermographism too. I still take 4 cetirizine a day as well as the Xolair
This was from 15 mins cleaning (without Xolair)

@NotMyCat See this is what I'm worried about. What if I finally get diagnosed and then the doctor leaves? Which is sort of what's happened to me at the moment for complicated reasons. I'd never even heard of MCAS until a couple of months ago, but it all makes sense but now I can't find anyone to help.

@PeppermintMocha It certainly sounds like you might have MCAS, especially with those medications. I'm really envious that you got prescribed them so easily! A lot of patients do overlap with Ehlers-Danloss and/or hypermobility, it seems. I've had more or less the same symptoms as you and was basically told to get lost. There's so much gaslighting going on, they've actually referred me to a Psychodetermatologist but I'm not going to go.

Why are you not going to go to the Psychodetermatologist? Do you know what they do?

They haven't told you to get lost if they've given you this referral.

Montelukast, Fexofenadine, and higher doses of cetirizine - this is me with prednisolone regularly (usually twice a month now but often we do a six week course), and I am on the higher dose of Fex too.

What difference would an official diagnosis make to your treatment plan? The name isn't important, just that you get the treatment you need.

Usually a treatment plan is made on the back of a diagnosis. You work out what's wrong and then you treat it. Without a diagnosis you're throwing medication at symptoms, aren't you. Your tone is really unhelpful.

Dr Deering
I know you said no men but I have a friend with MCAS and this doctor has unlocked all the treatment she needs, not just meds, a whole treatment plan that means she’s now doing really well.
He’s also not in London but would be worth a try if you’re prepared to travel.

@Amaterasux Yes I do. They work with patients who (a) have dermatology conditions that are exacerbated by stress, (b) are distressed by their already-diagnosed condition (e.g. visual conditions that lead to people treating them differently or staring in the street etc), and (c) are basically being dismissed as there being nothing wrong because it's all psychosomatic, because it's easier for them to dismiss you instead of doing any testing, and eventually write back to your GP to say you should be treated as a mental health patient. I'm not stupid. This sort of stuff frequently happens to people with CFS/ME, and by the looks of it, EDS too. Attending a psychological assement is basically like agreeing there's nothing really wrong. I've already had enough gaslighting and I won't be falling for it again.

Sorry @allergyupset I missed your question, she is private but open to new patients. Also wanted to mention that i had to come off montelukast - i had horrific, horrific side effects. She managed it all with me and helped me with Low histamine diet

@Amaterasux You haven't seen the letter they sent to my GP. They specifically said that nothing is wrong so they're not going to even bother testing me, so they're referring me to the psychologist guy due to there being nothing else to observe. They can get lost.

@allergyupset thats actually not correct, and to be honest I am now not surprised your GP is not offering you another referral. I am sorry you feel you have been gas lighted though (although a psychodermatologist can help you work through that).

MCAS is a stress-related illness and can be massively exasperated by stress - your quickest way to get tested currently available to you is probably via that psychodermatology appointment.

I don't need to see the letter - you are asking for a referral whilst telling the people who are trying to help you to get lost; it's not an easy thing for doctors to deal with.

What tests have they done?

Amateurx

Oh don't be so dense. The OP is desperate because her symptoms are considered psychosomatic. That certainly does tend to make patients rude and the best way to exacerbate it is to pretend their rudeness is the issue, as I think you know. The best way to help the patient is to take them seriously. The OP did not become like this overnight. If you were in constant pain and had your perceptions continually questioned you might become overly direct as well. It doesn't sound like her GP was at all helpful in the years leading up to this referral.

@Amaterasux They have done no testing whatsoever. None. Because they took one look at me and decided that nothing was wrong.

In fact I have found the letters now. The one they wrote to my GP includes "On examination today, there was nil to be seen on examination of the skin... we have discussed with [my name] today about a possible psychodermatological component... we do not think there is any underlying determatological diagnosis so we have discharged her from our care today but we would be very grateful for [Psychologist]'s review and will arrange a referral today".

They also sent me a copy of the referral letter they sent to the psychologist. It says "There was nothing to be seen on examination today and we have discussed with her a possible psychodermatological component and so I would be very grateful if you could kindly review".

They have deliberately left out a whole host of important information which I won't go into now. I gave them a LOAD of other history of stuff that's been going on with my body, and they completely left it out of the letter.

And yet a few days later I went to a private doctor. She asked me a load of detailed questions and did a thorough examination, and told me straight away about MCAS, which nobody in the NHS had even bothered telling me about.

Psychosomatic doesn't mean that there's nothing wrong, it means that physical symptoms can be caused by psychological factors. I have recently developed urticaria and angioedema, no obvious trigger although high histamine foods do make it worse. The first thing the GP asked is if I was under stress. Not because she thought I was mad or malingering but because it is a precipitating factor. A psychodermatologist helps with that, but is also well-placed to recognise problems that don't have psychosomatic factors.

A family member has stress-related psoriasis which a psychoderm helped with- there was no suggestion that they're making it up.