The UK Mastocytosis Support Group | HealthUnlocked

The UK Mastocytosis Support Group

596 members•253 posts

Sodium Chromogligate

Just reordered this item which appears to be working very well and the price had jumped, in a month, for 200 x 100g capsules from c.£130 to over £300, has...

Just reordered this item which appears to be working very well and the price had...

Longcoviddad

•6 days ago

6 Replies

Teenager with mastocytosis uticaria pigmentosa

hi I am wondering if there are any other parents of a child with Mastocytosis Uticaria Pigmentosa? My son was diagnosed at 4 months by great ormond street,...

hi I am wondering if there are any other parents of a child with Mastocytosis ...

Suziewooldridge

•3 months ago

2 Replies

MCAS Specialist in Midlands? or within 2 hours drive?

Hi, Can anyone recommend a specialist who is knowledgeable about MCAS and will diagnose and treat it, who is currently taking on new patients please?...

Hi, Can anyone recommend a specialist who is knowledgeable about MCAS and will ...

moneyangel22

•4 months ago

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Cutaneous Mastocytosis and Epi Pens

I was diagnosed with Cutaneous Mastocytosis this year. I’ve always had a few spots on my legs but nothing to write home about. Covid came (serious dose) and my...

I was diagnosed with Cutaneous Mastocytosis this year. I’ve always had a few spo...

amadamico

•4 months ago

5 Replies

hello all

hello all. this all started when i noticed my skin doing weird things a year and a half ago. i now know it's called skin writing (dermatographia). what's odd...

hello all. this all started when i noticed my skin doing weird things a year an...

Blanketttime1

•4 months ago

5 Replies

How do you get diagnosed on the NHS

Hello all. I've just joined this forum and have a bit of a perplexing question. For years I've suffered from food intolerances and mild allergies. I have had...

Hello all. I've just joined this forum and have a bit of a perplexing question. ...

Treetop33

•5 months ago

4 Replies

not really sure what to do.

hi all, hope i'm not taking up too much of your time. this might be a touch long. i do apologise. i'm e. i'm 21; and i have urticaria pigmentosa. for the...

hi all, hope i'm not taking up too much of your time. this might be a touch long...

kirbtopia

•5 months ago

2 Replies

Does anyone get neurological symptoms with MCAS or Mastocytosis? (Eg. Numbness, tingling, muscles twitching, etc...)

Does anyone get neurological symptoms with MCAS or Mastocytosis? (Eg. Numbness, tingling, muscles twitching, etc...) As well as the changes towards foods, some...

Does anyone get neurological symptoms with MCAS or Mastocytosis? (Eg. Numbness, ...

Suffering_sunny

•5 months ago

3 Replies

Could MCAS a possibility?

Hello everyone, I have been wondering for a while if I could have MACS. Last year I was diagnosed with a Raw Pecan allergy, borderline brazil and salami...

Hello everyone, I have been wondering for a while if I could have MACS. Last ...

Hidden

•5 months ago

18 Replies

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...

mcas_bestie

•8 months ago

6 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

•8 months 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

•9 months 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

•9 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

•9 months ago

3 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

•10 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

•10 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

•10 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

•10 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

•10 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

•1 year 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

•1 year 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

•1 year 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

•1 year 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

•1 year 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

•1 year 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

•1 year 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

•1 year 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

•1 year 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

•1 year 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

•1 year ago

2 Replies

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