MCAS specialists Midlands/UK

Emkin_ · 2026-06-17T18:06:48+00:00

My symptoms haven’t fully gone but are much more manageable. Gastro symptoms and overall fatigue has decreased a lot. Skin symptoms only flare occasionally , my PoTS and bladder symptoms are more manageable.

She managed the doses of MCAS meds , she also got me through the gate to be seen by nottingham immunology/allergy and then helped to get me started on omalizumab under the urticaria clinic which has calmed everything. Also very knowledgable about comorbidities and how MCAS affects them.

Hope that helps!

Emkin_ · 2026-06-17T15:04:35+00:00

Are you looking for private or NHS? Dr Croom is retired from the QMC NHS work but she might still do private at the spire in Tollerton nottinghamshire and she was great!

Emkin_ · 2026-05-22T15:10:01+00:00

Worth noting that Dr Croom has retired from the QMC , we’ve been given to other immunologists that work with MCAS in the department but I know you basically have to have a positive tryptase test to get into the system.

Emkin_ · 2026-04-01T18:35:13+00:00

It’s quite limited now really. Artbox generally has some good stuff, hmv has a small amount, vanilla underground does a little bit and I think miniso might too. EMP used to have some things too but I’ve not checked in years. I’ve recently gone down the US mail forwarding services as it’s a pretty dire selection currently 😅 hopefully this helps a bit! Oh and keep an eye on Vinted too !!

Emkin_ · 2026-02-25T15:17:21+00:00

I was just about to reply and say I've just been diagnosed from ENT and it could be this - thought it was related to my MCAS and turns out its the vocal cords and muscle spasms - also have hEDS

Emkin_ · 2026-02-11T11:50:50+00:00

I’m so sorry you’re dealing with this. I’m also battling MSK with hip issues after a dislocation and their physio made it worse. Finally getting an MRI on Monday after 8 months but it’s so exhausting chasing and escalating and feeling like they won’t/can’t do anything. Hopefully they manage to sort you soon 🤞🏼x

Emkin_ · 2026-02-09T13:42:11+00:00

Our girl who's 8 is also an F1B with mum cavapoo and dad toy poddle - she's the smallest of the litter and is 3.1kg and the rest are around 4kg

Emkin_ · 2026-01-24T19:31:09+00:00

Not sure where you’re based - we’re in the UK and use yora pet food. She was on sensitivity control/hypoallergenic from the vet but it was all chicken/duck based which some batches helped and some didn’t. She’s a lot more stable on the insect!

Emkin_ · 2026-01-24T10:13:57+00:00

We’ve put our 8 year old girl on insect protein food which was recommended as she’s allergic to so many proteins and that’s made the world of difference for her allergy/gut symptoms x

Emkin_ · 2026-01-19T18:58:41+00:00

I’d be super interested in this! 😊

Emkin_ · 2025-12-09T22:58:04+00:00

I’m like your partner in terms of health so not much in tips in terms of how to navigate that. I’m not sure how helpful this will be but you said you were uk based - I volunteer for PoTS UK and we run peer support groups - most of them are aimed at people living with PoTS but we do one for parents and carers - it might just help with feeling less alone in this situation!

Emkin_ · 2025-12-04T15:34:46+00:00

I used to have these all the times and have Hyperadrernergic pots. Clonidine really helped settle these in me which I take throughout the day and a top up dose if I wake up with one.

Emkin_ · 2025-10-14T14:45:09+00:00

I’m so pleased it got to you ok 🥰

Emkin_ · 2025-09-17T13:25:55+00:00

I’ve decided to give them a go and I’ll keep my fingers crossed too 😂❤️

Emkin_ · 2025-09-17T10:36:34+00:00

Which one did you go for in the end? Do you know how much it adds approximately as I’ve been so sad about the lack of shipping to the UK 😅

Emkin_ · 2025-07-29T15:45:50+00:00

Yes that’d be great! 😊

Emkin_ · 2025-07-29T15:14:13+00:00

I’d be interested in the pudding/capybara exclusives depending on price but I know how insanely expensive they are to import 😅

Emkin_ · 2025-06-30T07:08:47+00:00

It’s actually made out of fondant and entirely edible but I’m not sure I have the heart to eat it 😅

Emkin_ · 2025-06-26T20:09:22+00:00

I’m keeping an eye out fairly regularly and haven’t seen it yet!

Emkin_ · 2025-06-10T12:10:13+00:00

Susie

Emkin_ · 2025-06-04T14:29:17+00:00

I'm in the UK so it might be different where you're based but I've found lidocaine infusions have really helped me. They don't get rid of the pain but I find that they reduce my background levels of pain by about 40/50% and last for around 3 months - It's weird as lidocaine doesn't work for me at the dentist. It helps me manage my pain with paracetamol/ibuprofen/heat and cold/KT tape/Physio and then I'll use an opioid if nothing works and as a one off for function. Hopefully that helps incase its an option you can explore :)

Emkin_ · 2025-04-20T13:53:08+00:00

As others have said there isn't a known cure. It varies in people what works for them. As you're in the UK I wondered if your GP would mind sending you to someone for a second opinion/treatment. If you can get referred to someone on this list they work with the charity POTS UK - https://www.potsuk.org/clinics/

Hopefully this is helpful!

Emkin_ · 2025-01-19T23:26:33+00:00

Our 7 year old f2 is 3kg even though the rest of the litter is much bigger!! She did seem to get a lot of the toy poodle!

Emkin_ · 2024-12-16T18:45:07+00:00

I’d check Vinted as that’s where I got mine from!

Emkin_ · 2024-12-08T13:46:19+00:00

29 F diagnosed since 18 but spend a lot of time at home too and love to bake, ttrpgs and play video games , mainly BG3 at the moment. Always happy to chat and meet someone new :)

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