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Original poster

Please help - Mast Cell Activation Syndrome (MCAS)

103 replies

allergyupset · 19/08/2021 14:50

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.

OP posts:
EyebeIbewe · 21/08/2021 11:52

For those of you getting prescriptions privately are you paying privately for them or are you then getting it transferred so the NHS fund it?

Original poster
allergyupset · 21/08/2021 13:00

@EyebeIbewe

For those of you getting prescriptions privately are you paying privately for them or are you then getting it transferred so the NHS fund it?
From what I've read on another group I'm on, it seems to be a bit of a mixed bag. Some GPs take on the NHS prescription, but they are others who dismiss the company's opinion and refuse to take it on, so there are people out there who are stuck paying for private prescriptions. It depends on the attitude of your GP, as far as I can tell.
OP posts:
Original poster
allergyupset · 21/08/2021 13:03

Dismiss the consultant's opinion. Silly autocorrect.

OP posts:

Interested in this thread?

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General health
Original poster
allergyupset · 21/08/2021 13:06

While we're here, why do so many expensive Harley Street doctors have such terrible websites? They look like they were designed about twenty years ago. Bad enough that if it was a retail website, nobody would buy from it.

OP posts:
FlowerySusan · 21/08/2021 13:34

Does anyone else have anaphylaxis?

I had another one last night . Not bad enough for epi pen or paramedics but I am really fed up and it is making me anxious .
I am wondering if it it a hormone thing and if I am menopausal.
I need to get travel insurance and not looking forward to that task with my medical history.
Does anyone else think their is a link to menopause?

This condition is shit.

Gygygygygygygygy · 21/08/2021 17:11

Luckily my GP has been happy to prescribe me the drugs advised by the private consultant. He's also run some blood tests as necessary.

Gygygygygygygygy · 21/08/2021 18:15

@FlowerySusan

Does anyone else have anaphylaxis?

I had another one last night . Not bad enough for epi pen or paramedics but I am really fed up and it is making me anxious .
I am wondering if it it a hormone thing and if I am menopausal.
I need to get travel insurance and not looking forward to that task with my medical history.
Does anyone else think their is a link to menopause?

This condition is shit.

I have throat/tongue swelling, breathing issues, dizziness and palpitations. It's horrendous and very scary.
Gygygygygygygygy · 21/08/2021 18:16

It's been causing severe anxiety. I also wondered about perimenopause. I don't think it's helping that's for sure!!

HummingBeeBox · 21/08/2021 18:16

My friend has a specialist at Addenbrookes, only one in the country I think. I'll try and find out the name

FlowerySusan · 28/08/2021 20:41

@HummingBeeBox did you find out the name of the specialist ?

BlackeyedSusan · 28/08/2021 21:03

We are skirting round the edges of this issue. Definitely have some symptoms of POTS and MCAS (not sure if they are bad enough though) but the chances of getting past the GP are miniscule.

DD is even worse but we may not make progress with her condition until she is an adult and can go private.

HummingBeeBox · 28/08/2021 23:54

@FlowerySusan yep, Dr Alan Hakim

HummingBeeBox · 28/08/2021 23:58

www.facebook.com/groups/368740546663534/?ref=share

May be helpful too

HummingBeeBox · 28/08/2021 23:59

www.facebook.com/groups/MastMovement/?ref=share

And this

HummingBeeBox · 28/08/2021 23:59

www.facebook.com/groups/1077912879015351/?ref=share

FlowerySusan · 30/08/2021 20:21

@HummingBeeBox

Thank you . That’s really helpful

HummingBeeBox · 30/08/2021 22:02

@FlowerySusan my friend has been absolutely through the ringer with it all and has lots of handy hints!

Clw16 · 30/12/2021 19:26

@allergyupset I'm in a very similar situation and I'm so glad you asked this question!
Me and my two and a half year old son started reacting to all different foods, washing powders, perfumes ect all of a sudden in August/September this year. Both also started having breathing difficulties and asthma like symptoms that go with antihistamine meds. It looks like the glue on the vinyl flooring in my flat reacted to the sub floor and we are allergic to what we have been breathing in over the last 6 months. My son has been rushed in to hospital 3 times now anaphylactic just being in the flat. No doctor will listen to me and I was called in 2 weeks ago to say they are referring me as they think its "food anxiety" and stress, completely ignoring the fact my son swells so much he can't breath as he has an appointment coming up at st Thomas' in 2 weeks time so they dont need to worry about him and my symptoms aren't as bad (I've lost 3 stone in weight and now classed as underweight because I can hardly eat anything!) I'm so angry at the current system, doctors do not listen and can't be bothered to look any deeper.
I really hope you find a doctor that listens and can help get you better.
I have started speaking with a nutritionist in the hope they can help me whilst I fight to find a doctor who knows about MCAS and can help us further.

CAN1M · 30/12/2021 19:37

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 Shock Shock Shock this is awful!!

Nothing to offer you but sympathy, OP. This sounds horrible and I hope you get the help you need soon xx Flowers

Clw16 · 10/01/2022 18:19

My son keeps randomly getting anaphylaxis, a few times we have had to call an ambulance but most of the time piriton calms it down so he can breath. He gets a lot worse when he is ill and reactions seem more random.
I keep getting my throat and tongue starting to swell, sometimes my lips too, even just getting out of a warm bath or shower into a cold room can cause a reaction. I hadn't thought about hormones possibly having an impact.
It is such an awful condition, I wish more doctors were aware!

Starrr123 · 10/05/2023 20:47

@Namechange600 did the famotidine help much? Ive just started it x

Namechange600 · 10/05/2023 21:53

Yes it does help. I notice when I don’t take it. Also take anti histamine plus POTS meds and pain relief for endometriosis/adenomyosis too - the combination of this keeps me on the road.

Starrr123 · 10/05/2023 23:08

@Namechange600 i was put on bisoprolol which i had a reaction. That was for my pots, how long did the medication take to help. Im due to go away with my child n partner and im sooo worried xx

Namechange600 · 11/05/2023 06:52

I’m afraid I can’t remember how long it took to make a difference as started it a couple of years ago now but probably not that long

Starrr123 · 11/05/2023 13:05

@Namechange600 ik thankyou :) do u still take them ? X

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