u/EmbroideryBro

▲ 16 r/MCAS

I can SMELL things!!

Just got Chromolyn Sodium nasal spray a week or so ago after a lifetime of thinking I just had a weak nose, and then after using Chromolyn Sodium oral and noticing that my nose cleared slightly after every dose for a few minutes.

It took a couple of days, but I've gone from needing to blow my nose 20+ times a day to 2-3 times a day. I can breathe. I can SMELL! Oh my god. I didn't realize you could actually smell food outside of a restaurant. That you could smell flowers anywhere other than up close. It's like I've finally gotten my fifth sense.

I assume it's my MCAS, and not some seperate issue, and I just needed to celebrate for finally getting a health win for once in an age.

I didn't even know you could smell individual items in the fridge.

I can smell things.. :]

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u/EmbroideryBro — 4 days ago
▲ 48 r/eds

Can I leave a Dr's Appointment at any time?

Very literal use of that flare lol.

My soon to be ex-neurologist is making me go to a doctor's appointment to get my migraine medication. I'm so close to my new neuro's appointment, but don't have enough medication to get me there.

Last time I saw him, he insinuated that testosterone was the cause of all my problems (I've had migraines LONG before starting T) and when I asked about hypermobility (before I knew that yes, I Do have it, and yes it is a problem for me) he got REALLY angry with me. Told me that it couldn't contribute, and even if it did there's no cure or solution, and then said he was deleting from the medical record that I'd even asked. He put incorrect information on my record, too -- nothing wholly significant, but it pissed me off after the fact. I was so in shock that I didn't even protest.

Now i need my medication, and if I don't get it I'll be in a month of pain. the only choice I have is either to go, or to suffer.

If he's as. Everything as he was last time, can i just leave?

Edit: I might not be able to reply everything, currently developing.. You guessed it.. a migraine 🙃. Thank you to everyone with advice, and I welcome further advice if people have it -- I may not reply immediately, but I am reading every comment and appreciate them.

This Neuro made me feel very, very small, and I am not looking forward to seeing him again. But your advice has helped me feel a bit more brave.

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u/EmbroideryBro — 5 days ago

Hi! I'm trying to find a recipe for strawberry topping (for desserts and such) and can't find one without lemon juice in it. Unfortunately I'm allergic*, and am not really eager to see if I've lost limes too. What could I use in place of lemon (or lime) juice? I thought vinegar, but my guess is it wouldn't be masked well enough. Is the acid necessary, even?

I could just make it for my roommate with lemon juice, but I'd really like to be able to eat it too.

*I have Mast Cell Activation Syndrome, which basically means at any time my mast cells will decide that actually, they're going to release histamine for a food I've been eating all my life. It's not a true allergy, usually, but anaphylaxis doesn't really care how true an allergy is. (This isn't super relevant, but I like to be a little informative.)

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u/EmbroideryBro — 19 days ago