MCAS (particularly when combined with being autistic) gives you the ability to smell everything which sounds like a superpower, but I can assure you is absolutely vile.
Thankfully my new meds seem to be really helping. Ian opened a new packet of lightly scented dog poo bags last night and I didn't immediately eject them from the house, so I'm calling this progress! :ablobcheer:
Awhile back I went to a specialist for unexplained & painful lower leg swelling. His diagnosis?
“Maybe your legs are just getting fat.”
Horrified…I asked how many people gain weight ONLY in their calves. He shrugged me off. A 🧵 on knowing your body & advocating for care
This doctor did NO tests before deciding it was weight gain. Wouldn’t discuss it with me further & wouldn’t permit me a second opinion. I went home completely dejected and also worried because I KNEW something was wrong.
For the next few days I elevated my legs as much as possible and tried to gently massage them to see if it helped. They just kept getting bigger. Eventually they started weeping (fluid was seeping out of my skin) and my ankles were dislocating from the pressure.
So I went to the ER. I was actually nervous about going because I could only imagine what that doctor had put in my chart. Thankfully I had a doctor who took the swelling very seriously and ordered a wide range of tests (and immediately put me on bed rest to protect my ankles)
Turns out it was a combination of third spacing from my MCAS (when the fluid doesn’t stay in the vascular system & leaks out into the tissues - can be a big issue if you have POTS as well) and low albumin. Dangerously low albumin.
Needless to say I was suffering from malnutrition due to my extensive GI issues and that was causing the swelling. It most definitely wasn’t weight gain. I was underweight with the exception of my legs.
I never knew that low albumin could cause painful swelling like that - nor did I even think that I was suffering from malnutrition. But with both POTS & MCAS it makes sense.
Our digestive systems are controlled by the autonomic nervous system (the system malfunctioning when you have POTS) so it’s not uncommon to experience vomiting, diarrhea & other gastric complaints.
MCAS only compounds the issue by limiting the foods you can tolerate and also causing vomiting and diarrhea. The two conditions make getting adequate nutrition a challenge - especially if you’re on the severe end of the spectrum
I’m very grateful to the doctor who figured it out and helped me get homecare so I could get proper nutrition & stay off my feet while the swelling was at its worst. But it took a LOT of courage to go to the ER after being so rudely dismissed.
This is a lesson in the importance of knowing your own body & having an advocate with you whenever possible. I KNEW something serious was wrong but I had no one with me to challenge the first dismissive doctor. And he was completely unwilling to listen to me.
Don’t ever feel like you can’t get a second opinion or go to a different hospital if you feel you aren’t being taken seriously. And don’t ever apologize for advocating for your health. If you don’t have someone who can go with you - try & phone or video a friend.
Lastly can we please start listening more to patients? We know our bodies best and when you dismiss us it causes not only physical damage - but emotional damage too. You make it harder for us to seek care in the future.
Patients shouldn’t be dismissed without any tests being run. Had I not gone to the ER I could have ended up with life threatening cardiac issues from the electrolyte & fluid imbalance. A simple lab test would have confirmed the diagnosis had the first doctor cared to do them.
This experience was also an excellent reminder of the far reaching effects of dysautonomia & MCAS. It’s important to be as educated as possible in these conditions & the strange downstream complications they can cause.
And remember dismissal & gaslighting is often far worse for marginalized individuals. There’s a LOT of bias in medicine. If you’re someone in a position of privilege please call it out when you see it - and offer to be an ally to those who need support. Allies save lives
I've an appointment with an #MCAS doctor this afternoon. Gutted I've had to go private but the NHS has so little knowledge of the disease and diagnosis is really rare. :blobsad:
So, I guess I'll get to see if my self-diagnosis is right.
@Claydisarray@lomanfeusagach sounds like we're on a similar new mystery tour of #MCAS I've not got the drugs bit yet but trying out the diet. Did look up the recommended prebiotic and that's also mildly prohibitively expensive!
UK folks! I'd be really grateful if you could take a moment to sign this petition - Fund increased care and support for people with #MastCellActivationSyndrome.
I've been trying to get a diagnosis for #MCAS but the NHS doesn't really recognise it as a condition. Many MCAS patients are misdiagnosed as a result meaning that we're not getting appropriate care or treatment.
IN OTHER NEWS #chemo was bound to do a number on my immune system but then came #COVID19 and it's been a double doozie on my body.
but here's some anecdata: THING1 got me some lactose free choco milk cuz I thought it would help with my dwindling appetite.
nope.
started wheezing and coughing within minutes. even as "lactose free" something in the milk (and i know it's not the chocolate) triggered a response. so i backed off for a couple of days. guess what happened?
@blogdiva
> could LC19 on some people be the consequence of allergic reactions they don't know they have?
I do wonder whether Covid has turned some latent food allergies / sensitivities into patent ones, or created new ones. In my case, eggs, dairy, gluten, oxalates, histamine. Nothing major like anaphylaxis, but now I'm paying attention to things I never gave a second thought before. ("Why is my tinnitus going to eleven today? Spinach? Fish? WTF?") #MCAS
Although I absolutely can't afford it, I've just booked an appointment in March with a private doctor to try and get an #MCAS diagnosis (as the NHS is dreadful with mast cell disorders)
I'm trying my best to see it as an investment. If I can get diagnosed it means I can get on mast cell stabilisers, meaning I can live a more normal life - and create more art. :ablobsweats:
Today leading advocacy orgs and researchers sent a letter calling on President Biden to include #LongCovid and related diseases like #MECFS, #POTS and #MCAS in the next federal budget.
Now there’s an option for patients and allies to add our names well—super quick way to lend support!
Want to flag a Long Covid study in need of healthy controls—I’m told they’re having trouble because healthy participants keep getting #Covid and often are no longer so healthy afterward 🫠
Which is a great reason all of us should want to push LC research forward—and you can help here entirely from home! Just sign up and the surveys will be emailed to you!
Got a HEPA air purifier yesterday and I'm completely sold! I've a deviated septum and for the first time in forever, I woke up with clear airways this morning 🤯
(Plus they're highly recommended for folks with #MCAS)
This is an excellent BBC article on #MastCellActivationSyndrome and the complete lack of knowledge surrounding this illness.
#MCAS can be triggered by Covid, but I've had debilitating symptoms for over 5 years and the flare I'm currently in is awful (I'm down to around 10 safe foods and any exertion makes me breathless)
I've a catch-up with my GP next week but I'm not hopeful of a positive outcome. Diagnosis through the NHS seems impossible. :ablobrollingeyes:
The more I find out about #MCAS, the more it seems to be a miserable condition to have in the UK as the #NHS barely recognises it and official diagnosis is rare.
Sooooo, how are chronically ill people supposed to be able to afford private health care? Asking for a friend :ablobdizzy: