The UK Mastocytosis Support Group | HealthUnlocked

The UK Mastocytosis Support Group

541 members • 244 posts

Shortness Of Breath

Hi, I'm relatively new here as I'm still in the process of diagnosing MCAS. I really struggle with constant shortness of breath and a feeling of pressure on my...

Hi, I'm relatively new here as I'm still in the process of diagnosing MCAS. I re...

kibitza_chic

•1 month ago

3 Replies

knee replacement

hi, I’m due to have a knee replacement in a few weeks and wondered if anyone who has had the procedure experienced any issues. I’m aware of my issues regarding...

hi, I’m due to have a knee replacement in a few weeks and wondered if anyone who...

Bigskies

•1 month ago

3 Replies

MCAS Ketotifen

I suffered with long Covid after catching it at 38 weeks pregnant and was later diagnosed with MCAS and put on Ketotifen. I’ve been on it a year and struggle...

I suffered with long Covid after catching it at 38 weeks pregnant and was later ...

RoseStar

•1 month ago

1 Reply

Systemic Mastocytosis and Ehlers Danlos Syndrome hypermobility. Does anyone else have this combination of diagnoses

I was diagnosed with Postural hypotension / POTS some years ago but in 2022 the Cardiologist diagnosed that additional symptoms I was getting (flushing,...

I was diagnosed with Postural hypotension / POTS some years ago but in 2022 th...

Marcilhac

•2 months ago

15 Replies

Urticaria Pigmentosa and tatoo

Hello everyone. I am 43 years old and i ve been diagnosed back in 2004 with urticaria pigmentosa. i had skin lesions and itching after shower . Very often i...

Hello everyone. I am 43 years old and i ve been diagnosed back in 2004 with urti...

Morfoula1981

•2 months ago

2 Replies

nuclear medicine appointment for scan

Ihave to have a scan of thyroid / parathyroid. An injection of radioactive substance required. I have told consultant that I have mastocytosis. They say it is...

Ihave to have a scan of thyroid / parathyroid. An injection of radioactive subst...

Topnumpty

•3 months ago

5 Replies

advice?

Hello! My name is Sara, I'm 23 and living in italy at the moment. I'm Polish American though, and was diagnosed with indolent systemic mastocytosis in the...

Hello! My name is Sara, I'm 23 and living in italy at the moment. I'm Polish Am...

meerkatsara

•3 months ago

2 Replies

sodium cromoglycate - criteria

Im diagnosed with MCAS and prescribed sodium cromoglycate for gut symptoms - this med has been life changing! however GP no longer wants to issue it saying...

Im diagnosed with MCAS and prescribed sodium cromoglycate for gut symptoms - thi...

Schola

•3 months ago

3 Replies

dental floss

i noticed some time back that every time i flossed i had flushing, shortness of breath and oddly, a rotten taste in my mouth. i googled it and saw many have...

i noticed some time back that every time i flossed i had flushing, shortness of ...

sam99a

•3 months ago

2 Replies

Sodium cromoglicate - GP won't supply any more

Good afternoon everyone and thank you in advance for any help anyone might be able to offer. I have MCAS and POTS (as well as autoimmune, ME/CFS, histamine...

Good afternoon everyone and thank you in advance for any help anyone might be ab...

PurpleNel

•3 months ago

16 Replies

MRI with contrast dye

I need some advice / opinions, please. I have to have a MRI scan of my brain, to help diagnose reason for unilateral tinnitus and bilateral rapid...

I need some advice / opinions, please. I have to have a MRI scan of my brain, t...

Topnumpty

•5 months ago

10 Replies

MCAS, but possible Masto?

Hello, I'm almost 39 and have a diagnosis of MCAS through Dr Claire Taylor in Perth. I've been treated for MCAS for just over a year, but have been...

Hello, I'm almost 39 and have a diagnosis of MCAS through Dr Claire Taylor in ...

Loulou8484

•6 months ago

3 Replies

Lost hearing, vertigo and now rash is this?

I hope someone can help me. I was diagnosed with MCAS in 2015 at Guys and St Thomas then discharged when the drugs started to work. I’ve been in and out of...

I hope someone can help me. I was diagnosed with MCAS in 2015 at Guys and St Tho...

Redfleur

•6 months ago

5 Replies

to bone marrow biopsy or not?

my C-kit results is negative and my tryptase is higher than the last test but still normal so likely only cutaneous Mastocytosis, however I know that 20% of...

my C-kit results is negative and my tryptase is higher than the last test but st...

poshpen

•7 months ago

1 Reply

Mast Cell NHS Consultants?

Hi! I was wondering if anyone could share some names of NHS practitioners who have dealt with or have an interest in mast cell disease. My GP suspects I may...

Hi! I was wondering if anyone could share some names of NHS practitioners who ha...

aimee68

•7 months ago

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Popmusic1

Hi My daughter has been on Sodium Cromoglycate for MCAS but has been told it’s not available as there is a distribution problem with it.Nothing else has...

Hi My daughter has been on Sodium Cromoglycate for MCAS but has been told it’s...

Popmusic1

•7 months ago

9 Replies

How to get a Serum Tryptase test?

I believe that I have MCAS and hypermobility syndrome, and I am trying to get both diagnosed. So far, I've not had much luck. I had a reaction the other day...

I believe that I have MCAS and hypermobility syndrome, and I am trying to get bo...

Artemis88

•8 months ago

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Choking

Hi all,I have MCAS and hypermobility and am also menopausal (yeh!). I usually plod along OK but recently I've started to struggle with eating. I seem to lack...

Hi all,I have MCAS and hypermobility and am also menopausal (yeh!). I usually pl...

JW50

•8 months ago

3 Replies

Chlorinated water issues?

Hello, I'm new to the group and can honestly say my heart goes out to anybody else who really suffers with a Mast Cell Disorder because although I have not...

Hello, I'm new to the group and can honestly say my heart goes out to anybody e...

Melonlover

•9 months ago

3 Replies

London consultants?

Hi everyone, I've just joined this group and I'm desperately searching for a doctor who can diagnose my suspected MCAS. My physiotherapist is an expert in...

Hi everyone, I've just joined this group and I'm desperately searching for a do...

GirlBrown

•9 months ago

18 Replies

hi everyone

hi, I am new to this group, I have only recently been diagnosed with cutaneous mastocytosis, it’s taken nearly 12 years to get that. I’m still learning about...

hi, I am new to this group, I have only recently been diagnosed with cutaneous m...

SLW84

•9 months ago

2 Replies

Mast cell or .Mastocytosis ot HaT

Hi Has anyone seen Dr Grattan I believe he has an interest om al 3 of these Conditons I'm unsure what I have but I have symptoms of All 3 ie not sure which...

Hi Has anyone seen Dr Grattan I believe he has an interest om al 3 of these Cond...

HBEd

•10 months ago

1 Reply

New Member

Hello, I'm new here, dealing with chronic urticaria for about four years; I'm 18. My symptoms are mostly triggered by heat and stress. Is anybody else facing...

Hello, I'm new here, dealing with chronic urticaria for about four years; I'm 1...

Mr_Cookie

•11 months ago

2 Replies

Serum tryptase blood test

Hi, Can anyone advise me. I had my first immunologist appointment by telephone recently and the consultant wants me to have a serum tryptase blood test. I've...

Hi, Can anyone advise me. I had my first immunologist appointment by telephone r...

bcbg57

•1 year ago

10 Replies

I know this is a UK group but..

Hi everyone, I´ve been searching for Mast Cell syndrome sufferers in Ireland for the past while but have not been able to find much at all. Is anybody in the...

Hi everyone, I´ve been searching for Mast Cell syndrome sufferers in Ireland for...

Music_83

•1 year ago

2 Replies

Introducing myself - symptoms worsening, seeking a diagnosis (sorry for the long post!!)

Hi there, I strongly suspect I have a mast cell condition - which has currently flared up at its worst. Background: I was always very healthy, no allergies...

Hi there, I strongly suspect I have a mast cell condition - which has currently...

Irene3a

•1 year ago

6 Replies

DNA Testing ?

Has anyone been referred for, or used DNA testing for MCAS diagnosis? I understand there are genes which can identify deficient degradation of histamine, and...

Has anyone been referred for, or used DNA testing for MCAS diagnosis? I unders...

RoadTrippin

•1 year ago

2 Replies

Help finding Consultant Severe Gastro, brain fog & now Anaphylaxis issues! Long Covid?

Usual story of deteriorating health female aged 60 being referred on long NHS waiting lists here there any everywhere! I'm desperate enough to go private so...

Usual story of deteriorating health female aged 60 being referred on long NHS wa...

RoadTrippin

•1 year ago

3 Replies

Ketotifen Supply UK Q1 2023

Hello all, I was prescribed Ketotifen by a Neurogastroenterologist in late 2022 but have had no joy in getting my prescription dispensed ever since, with...

Hello all, I was prescribed Ketotifen by a Neurogastroenterologist in late 2022...

SlickQuiver

•1 year ago

2 Replies

Mastocytosis?

Hi I was diagnosed with MCAS back in 2015. I became incredibly ill after a antibiotic resistant Urine infection. I ended up in Intensive care and I have never...

Hi I was diagnosed with MCAS back in 2015. I became incredibly ill after a anti...

Redfleur

•1 year ago

2 Replies

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