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.

@smashionaltreasure Thank you for your support. It's very much appreciated after everything I've been through so far.

@bettybigballs Sorry to bombard you with questions, but would you mind telling me approximately how long ago you last saw her?

@ElCaMum I've been sexually assaulted by a doctor in the past and I'm not prepared to risk it again. It's women only from now on.

@cathyandclare I'm not prepared to continue this discussion.

I'm assumed to have MCAS (I have EDS and PoTS) but I've no chance of getting diagnosed as I'm in NI and we have no specialists here for it at all

There are specialist Hypermobility clinics in London that cover all aspects of EDS/HSD so it might be worth contacting them for advice... even if you don't have hypermobility issues, they may be able to advise who you could see or what your next step would be

You could also consider contacting dieticians, as many of them have an interest in MCAS. I don't think they can diagnose it but again, may be able to recommend someone who can

@UpTheLaganInABubble Thank you, that's a very good idea to contact dieticians, I never thought of taking that angle.

I also sent an email to an EDS charity earlier, but it was only a few hours ago so I'll see if they reply later.

@JellynoseMonkeyfish The psychologist is a man. So, no.

I am not prepared to continue this discussion and I won't be responding to any more comments about psychology stuff.

Thank you to everyone who's suggested actual doctors and other people to contact. Feel free to send any more in.

@allergyupset A bonus of going down the dietician route is that most of them tend to be women. Hopefully you'll be able to get something sorted, I'll keep my fingers crossed for you

drkatebarnes.co.uk/skills/

GP and Medical Advisor to EDS UK

Just to correct a PP- it’s spelt Gideon Lack. My son has seen him and he’s excellent but very expensive and AXA didn’t cover him.

Dr Gall has been very helpful. I have poTS, EDS and I’m starting to question MCAS.

There's no suggestion that the OP equates the word psychosomatic with being accused of lying (what an insult to her intelligence) or that she doesn't understand the condition she has can be exacerbated by stress.

She would simply like to see a specialist in a specific field because she ticks all the boxes for that diagnosis. It is possible (but extremely convoluted) that her present referral to lead to her eventual referral to the specialist she wants. There's no reason for her to bother doing this however and it is risky given that in doing so she is starting down a pathway (given the wording of the referral letter) that assumes her symptoms are largely psychological. Far better to get your relevant diagnosis and take up this referral at a later stage for help managing symptoms. Even if she is incorrect in her self diagnosis, any idiot could see the benefit for her in reducing her stress levels by getting in front of a doctor who specialises in this specific condition.

The present referral is a bit like sending someone with endometriosis down a pain management/cbt pathway without seeing a gynaecologist first or acknowledging that endometriosis is a real illness. You can justify it but only by referring to 'stress' and grinding exceedingly small.

@smashionaltreasure I think I should hire you as my official spokesperson or something. You're amazing, thank you

I hope you have some luck with Dr Peers's Surrey clinics. I also had a bad experience with a male Dr and Dr Peers made me feel so safe and comfortable even though I was only with her for five or ten minutes. I actually didn't know she saw private patients so this thread has been helpful for me.

Unfortunately it doesn't look like Dr Peers has any availability until the new year and it's not even possible to book at the moment.

Such a shame as she sounds amazing.

I've often thought patients with mysterious illnesses need an advocate, OP. Glad to be of help however small.

@smashionaltreasure

I've often thought patients with mysterious illnesses need an advocate, OP. Glad to be of help however small.

Sometimes it's so hard. I went back and forth to my GP for 8 years with constant infections, had hundreds of antibiotics, at least 50 blood tests all "normal" It took a locum GP to do another blood test, look at all my previous ones and send me to haematology that evening, and I was diagnosed as chronic autoimmune neutropenia

Interesting. Whenever I read about these things, it comes up quite a lot that people finally got a referral from a chance meeting with a locum doctor. I suppose once your GP gets you know you, they build up a stereotype of you and eventually give up on you and stop being interested in helping. Maybe if you see a locum who doesn't know you, they can read through your medical history in a less judgmental way?

Mine was diagnosed by a GP from a different practice during one of the lockdowns when I got a telephone appointment with her by chance. She was amazing and gave me epi pens and rang me back the next day as she had done some research and thought I had MCAS .
I am planning to write a letter thanking her as it has changed my life being on the meds and having a diagnosis after almost 3 years of anaphylaxis for no apparent reason.

[quote allergyupset]@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.[/quote]
Yes, there was no problem with them being prescribed. I was sent to a dermatologist, again mostly because they had no idea what the problem was as there was nothing obvious, and it was quite intermittent. The dermatologist wasn't (as far as I know) labelled as a psychodermatologist, but part of her role was clearly to discuss the effects it was having on my quality of life and ways of lessening that generally, particularly if they couldn't find anything specific to pin the itching on, or provide any treatment that would help. She was fairly clear that some of the medications would be a matter of experimenting to see if they might make a difference or not. She never did come up with any kind of diagnosis, but as she was a dermatologist, her return letter to the GP said that it could be worth trying some of these medications to see if any of them helped, as well as suggesting a couple of tests that would rule out some very rare conditions (which we both knew were not going to be the case). I then told the GP that I did want to try the medications, and I've had them ever since.

So if this doctor is also a dermatologist, as well as psychologist, then she might have the authority to prescribe the medications you would like to try for the symptoms, whether or not anyone ever agrees/believes/concludes that you have a particular named disorder or not. And once you have tried the medications and can see that they work, then it might be easier to get a diagnosis (or perhaps just continue to get the medications). Yes, it seems backwards to go about it that way, and I understand your frustration with it, but it might end up being pragmatic. Or it could be that this doctor will rule out psychological reasons for the symptoms, thereby forcing the GP to refer you further on.

I think the GP in my case just didn't want to have the responsibility for making the decision to try medication for symptoms that didn't have a specific name or diagnostic test, but she was happy to try any of the suggestions that came from someone else. So even a regular dermatologist, if you could get yet another referral to one - or go private - who just suggests the right medications - might be enough, as once you have evidence that they help, you could get them prescribed by the GP.

@PeppermintMocha I see your point, but this really wasn't how it was presented to me although I understand that it worked for you. It was clear from their tone that they were fobbing me off, and anyway this psychologist guy is a man. I might have even thought differently if there was a woman available, but no way am I going to talk to man about this. I used to go to private counselling a few years ago regarding some unrelated stuff, I spent hours trawling through the Counselling Directory to make my choice, but my very first criteria was that I wanted to speak to a woman. I just cannot see how I can talk to a male doctor about my feelings. Considering things like how many men don't understand the basics of male privilege, considering how many male doctors can't admit that they're more likely to ignore women's pain, considering how many male doctors are just downright misogynists, I just cannot see how women can feel comfortable seeing male psychologists of all people.

Anyway, it's an NHS appointment and I haven't even received a letter yet, and it'll probably take months. In the meantime, I've made a lot of phone calls this afternoon! I've phoned nearly every private doctor mentioned on here and even though most of them are no longer available, several of them have recommended other doctors so I've got several leads. Most of my enquiries were quite late in the afternoon, so I'm hoping to get some more replies on Monday. There's definitely a lot of info to be gained by making phone calls, as there really isn't enough info online. I'm trying to stay motivated and trust that I'll find the right doctor soon.

Good luck OP. I think it's really likely that you'll be able to get an appointment with someone. Keep working the phones and don't be afraid to email any doctors/researchers in North America as they are often kind enough to reply, in my experience.

@smashionaltreasure Thank you, and yes I'm trusting that I'll find someone eventually. I feel like I've gone into researcher mode!

Definitely do your research
I took an appointment at the local hospital, knowing they couldn't do Xolair and I wanted it. So I went, discussed, mentioned it and said I had previously been under dermatology at (Xolair) hospital. They said fine and sent me to there instead. I crossed my fingers it would be Dr Marsland (who I saw 15 years before) as I know he prescribes it, and it was!
So a bit of a workaround really

If you find someone available in the south east could you share it please? I have luckily been able to get a prescription for montelukast, famotidine and fexofenadine through a private immunologist which has helped somewhat but I need some advice going forward... there's been really no follow up and I don't want to be on all these medications forever. It's been pretty frustrating getting my GP to listen, and have had no face to face appointments at all!!

@Gygygygygygygygy Are you okay to say who this private immunologist was?

It was a male doctor - I will pm you the details. If you're not happy seeing in person he does e-consults and he did do very thorough blood tests which ruled out a lot of things. I have had some improvement also with taking vitamin b supplements. It's all a bit of a mystery and I think is an environmental allergen causing the issues, although had a flare up after the covid vaccine so wondering whether it's all long covid (even though I've never knowingly had covid).