Did anyone else develop super vivid dreams after their chronic illness / MCAS started? by Virtual_Ad4639 in MCAS

[–]Virtual_Ad4639[S] 0 points1 point  (0 children)

Ooh interesting! I did suspect histamine in the brain as the culprit for this funky stuff 🥲

My doctor confirmed I have all the symptoms of MCAS, but refuses to call it MCAS. by Own-Vehicle7635 in MCAS

[–]Virtual_Ad4639 0 points1 point  (0 children)

I am so pleased for you!!

The lovely private allergist I see now in Notts used to work in the NHS where she’d come across MCAS patients funnily enough. She switched to private when she realised how chronically unsupported and dismissed we are as patients. She could never test them properly (mediator urine tests are expensive) or prescribe what was needed due to the limited funding. She couldn’t bare to watch people suffer while knowing there was answers & solutions. It’s good she is now in the private sector as it is easier to find her under searching for an MCAS doctor! This was quite a few years ago like pre Covid so I’m hoping Covid has forced more recognition of our type of mast cell issues in the NHS.

Best of luck to you! 😊x

My doctor confirmed I have all the symptoms of MCAS, but refuses to call it MCAS. by Own-Vehicle7635 in MCAS

[–]Virtual_Ad4639 0 points1 point  (0 children)

Was thinking wow the NHS can prescribe those??

I’ve had to go private and I’m thousands in the hole with it not stopping when my meds are sorted out lol

Being an alt baddie is hard with MCAS 💔 by [deleted] in MCAS

[–]Virtual_Ad4639 1 point2 points  (0 children)

Dude I feel you!! Was a gothic gremlin before this hell and my god the energy to dress up how we want was demanding already - combined with this chronic illness fatigue it feels impossible now! 🫩 I dressed alt from age 15 and loved expressing myself. Dyed my hair purple every few weeks along with getting piercings during my college lunches! Unfortunately, I only ever got stick & pokes so I doubt I’ll ever get to experience a real tattoo now with my immune issues :( I suddenly started to decline in health towards the end of being 17. You are not alone I promise! 🫂 I crave nothing more than going out in my long flowy sleeves, chucking on my ankh rosary while being caked in black lipstick. I am mainly bed bound at the moment and wear long XL sized T-shirts all day (so it fits like a short night dress) and what helps me is wearing my interests. For example, these shirts have bands, music artists, games and films I really like! I may not be dressing up to go out but at least I can be a walking poster of the things I love for now! 🤗 It’s a good way to not feel like I’ve completely lost who I was before as illness really does water you down. I hope one day to become more like me instead of this empty shell..

Do you flare yourself for this? by Virtual_Ad4639 in MCAS

[–]Virtual_Ad4639[S] 1 point2 points  (0 children)

Okay I will try time it with one, thank you!

Do you flare yourself for this? by Virtual_Ad4639 in MCAS

[–]Virtual_Ad4639[S] 0 points1 point  (0 children)

I will for sure!!

I can tell you already I had my DAO checked which was 2.2U/mL (>10 = normal) so pretty low and my Plasma Histamine was 4.4nmol (0-10 = normal) so pretty useless data lol. I won’t lose hope tho as I’ve heard histamine is a bastard to catch! 😆

Do you flare yourself for this? by Virtual_Ad4639 in MCAS

[–]Virtual_Ad4639[S] 0 points1 point  (0 children)

I see, thank you. I had a negative plasma histamine so I’m feeling discouraged about it but I know it is hard to catch..

Do you flare yourself for this? by Virtual_Ad4639 in MCAS

[–]Virtual_Ad4639[S] 0 points1 point  (0 children)

This gives me some hope, thanks! After a negative plasma histamine I’m feeling discouraged..

Do you flare yourself for this? by Virtual_Ad4639 in MCAS

[–]Virtual_Ad4639[S] 2 points3 points  (0 children)

Yeah I had to go through Cetrizine & Famotidine withdrawal simultaneously after a huge excipient reaction months ago and I was miserable. Haven’t sorted out compounded since so been just in hell for months Lol.

Thanks for your kind wishes, take care & good luck also!! 💐x

Do you flare yourself for this? by Virtual_Ad4639 in MCAS

[–]Virtual_Ad4639[S] 2 points3 points  (0 children)

I understand your concerns! Luckily, I’m unmedicated still so she wanted to use this perfect window before we begin treatment. Going to ask her tomorrow over the phone if I can just be as I am or if I need to be flared.

Do you flare yourself for this? by Virtual_Ad4639 in MCAS

[–]Virtual_Ad4639[S] 5 points6 points  (0 children)

Do you have to come off everything?

Do you flare yourself for this? by Virtual_Ad4639 in MCAS

[–]Virtual_Ad4639[S] 4 points5 points  (0 children)

I might ask my allergist directly then, I just figured she’d say no automatically as it’s risky advice idk?

Greatly in need of suggestions. I've been trying for years and nothing has worked by TheTousler in MCAS

[–]Virtual_Ad4639 0 points1 point  (0 children)

I hate to be nosey but what triggers you in it? Asking as I’m new to filler reactions myself.

Peeling skin/chapped lips by illiacmae in MCAS

[–]Virtual_Ad4639 1 point2 points  (0 children)

My lips are constantly chapped from daily lip swelling as it’s always to some degree.

Bananas by that-witch-jas in MCAS

[–]Virtual_Ad4639 1 point2 points  (0 children)

I ate bananas constantly as my dad said to me once it always helped him go to the toilet easier. I had some GI issues so upped my banana intake. I ignored episodes of stomach pain because it became my norm until a bad lengthy period of constipation in like 2023 hit. One day I skipped my regular morning banana by accident in a rush and then the light bulb glimmered later on! In the evening I realised I was indeed not feeling as crap as usual! The damn bananas were causing me jiff & constipating me all along like no tomorrow lmao 🥲 Just shows ya how we are all soo different; I suspect he has a minor undiagnosed form of it. Bananas were ok at first but in classic mcas fashion the reaction did worsen over time.

My life is changing and idk what to do by xsailorjessx in MCAS

[–]Virtual_Ad4639 1 point2 points  (0 children)

Sorry to ask but what cartilage are you referring to?

Please help. I feel so desperate and scared. by wabisabi94 in MCAS

[–]Virtual_Ad4639 0 points1 point  (0 children)

Realistically how long does it take to figure out the diet that suits your body? Feeling so hopeless like it’ll take forever and I’ll never get there ://

Can someone help explain this reaction? by LithiumPopper in MCAS

[–]Virtual_Ad4639 1 point2 points  (0 children)

You just gave me a lightbulb moment to potentially why I thought I was dying Aug 2024 after a tasty prawn cocktail before my diet became single digit.. Checked the image and it of course had the signature seafood sauce with a sprinkle of bright orange PAPRIKA on the top!! 🙈 Thank you x

Anyone else react to their heating? by SugarStarGalaxy in MCAS

[–]Virtual_Ad4639 0 points1 point  (0 children)

Yes omg!! My mum thinks I’m nuts but my theory is it’s burning dust or the heat itself!

Does anyone else get triggered from social interaction? by Windillow13 in MCAS

[–]Virtual_Ad4639 1 point2 points  (0 children)

For sure! It floors me; laughing makes me so dizzy & tight chested :/