anaphylaxing

Maiysa just to pop in the mast cell "degranulation" just means that instead of being all relaxed the mast cells have been "activated" or turned on. When they activate they kinda explode and release their contents aka granules a process referred to as degranulation.

ALL it means is that the mast cells are turned on and releasing chemicals/mediators that cause the allergy like symptoms that we experience.

Mast cell stabilizers are supposed to help stop the mast cells from activating and releasing their mediatiors. Our goal is to stop mast cell activation or mast cell degranulation

I'm probably still not making any sense?

ooops MCAS is a debated entity but there are other tests for it like urine N-methylhistamine and prostaglanding D2

I have MCAS and POTS and have a lot of the same issues as you. I flush with almost everything I eat and when I'm having a reaction to a scent or other trigger. A normal tryptase does not exclude MCAS. You should see a doctor familiar with mast cell disease.

Have they ruled out carcinoid and pheo as a cause of flushing? If not, they should as allergists will want this excluded before proceeding.

For now try to see if you can identify triggers and AVOID them

there is a mast cell disorder forum if you google it.

Most treat with H1 and H2 blockers and mast cell stabilizers. I'm also on steroids and trying to taper off. I've been having symptoms for 8 months and still haven't been able to get total control of my symptoms.

Good luck and keep us posted

All they usually do for kidney stones is keep you hydrated and give pain meds to let them pass on their own. Unless your pain is unremitting and they are too big to pass; then they can do some fancier things.

The main thing is to rule out a UTI which it sounds like they did if they did a urinalysis.

Sorry you're having pain! Hope you feel better

Sorry to hear this Jen. What an ordeal you've been through. I hope you improve over the next 8 weeks. Are you still bed-ridden with frequent syncope? I hope you are feeling better.

Keep us posted as always

I did! And then it plummeted lower after florinef.......I was allergic to florinef. So I took K supplements for months, just stopped and eating loads of bananas hope it improves

I get tinnitus but its separate from the whooshing and most often in my left ear. the whoosing is very positional

thanks for sharing

Is there such a thing? Is it regulated by FDA? I'm allergic to Florinef, so very interested in this!

Any chance you're on Zantac ranitidine or anithistamines? I had a high 5 HIAA but when I went off those meds and repeated it it was normal. They said they get a lot of false positives from H2 blockers

I have MCAS and if I had to get another contrast scan I would premedicate. CT contrast anaphylaxis ruined my life and almost killed me. Radionuclide's are much less likely to cause allergy but I know MCAS patient's who have reacted.

Keep us posted

OOOHhh such a run around! I hope you find something that works! Fingers crossed for you

I get this always if I lay on my back or right side I think it's blood backed up from my heart. Only since POTS

Anyone else?

I had anaphylaxis to CT contrast but have never had an octreotide scan.

Do you have a history of allergies?

I think Octreotide has a low incidence of allergies etc. Do you have a high 5 HIAA? Are they looking for carcinoid?

Good luck and keep us posted!

I hear ya! "complex case" "unusual case" "high anxiety" "underlying condition"

After my anaphylaxis I found out it was written on my chart that I was very high anxiety. I couldn't breathe people?!?! Is that not a little unsettling. I guess I was just supposed to chill out and accept death instead of asking for help

So aggravating! More bad experiences that I can even remember.

My POTS started ON steroids. I'm trying to slowly taper off steroids now. I'll let you know if it gets worse. It's been a real struggle

How long have you been on Florinef? Steroids make me ravenous

I would REALLY want to talk to the Mayo docs. I kinda think it is quasi normal for your body to reject it as it foreign and that's why they premedicate alot with steroids. I would NOT get the next infusion without MORE premedication than you received and constant supervision during the infusion, but I wouldn't want to delay to much and not get the next one in case the frequency and schedule are supposed to help

Can you call his office and ask to speak to him or leave a message with his nurse? If unavailable ask for a neuro on call who is covering that you can speak to. You probably tried. But, that's how I would proceed

I don't take anything except my MCAD meds

Was recovering from anaphylaxis on steroids etc trying to taper. Gorged on pizza then went to have a nap. Heart went insane felt like I was dying.

The second most debilitating time was after starting florinef

I ran into the same issues at the same hospital. So sorry to hear you had those troubles too.

wonderful news thanks for sharing. what tests did you have done? Keep us posted

I force myself to get up, shower, get dressed. But I do cry and mope too. I try to do tasks like bake, walk, watch a movie

But it is so hard! it's normal to feel down, you have to let yourself experience some of it but you have to push through too

I tell myself "I'll be the most motivated person that ever was with XYZ condition"

Mine's all over the place too. 30's lying/sleeping , 150 standing but I usually have low BP with it. I'm not on any BP meds but am on MCAD meds

Good for you! Ignore other people! They don't get it. You are strong and brave and doing the right thing

I get symptoms similar to the ones you are describing. And often one sided. The right back of my throat. I don't think it ever fully unswells. Oh my gosh you doctor sounds FABULOUS! Hold on to her! Wow!!

Juile, that was a fantastic, informative post. Thank you!