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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Morphing MCAS? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1326401371 Message started by Anaphylaxing on 01/12/12 at 08:49:31

Title: Morphing MCAS?
Post by Anaphylaxing on 01/12/12 at 08:49:31

So, :D it seems over the last 8 months some things get better while others get worse. Eg I have a macular rash less often and I don't feel lumps in my neck as often. Stress still triggers me but I think I can handle slightly more than I used to.

BUT smells have sky-rocketed which has totally changed my life. It's ALL smells now. I just wonder if this will morph out too (hope so) but what will morph in next??

Title: Re: Morphing MCAS?
Post by Starflower on 01/12/12 at 11:46:48

That's one of the super-duper fun things about mast cell disorders (ha ha). Sometimes... just when you feel like you finally have things under control... your body throws you a new curve. When I first started going into anaphylaxis I felt fine in between episodes. A few months later I was no longer landing in the ER, but I was having daily problems with POTS, nausea, joint pain, and headaches. I wondered how much longer I could last before I would have to quit my job. That got better once I started taking Gastrocrom and Singulair, but then I started having problems with bleeding... nosebleeds, petechiae, easy bruising, abnormal uterine bleeding. Did lots of testing... ruled out all known bleeding disorders. I realized it must be part of the mast cell disorder. (The bleeding continues, but not quite as bad... and at least I know what the cause is now). Then I had a false positive TB test. Then I started having bad reactions at children's birthday parties... latex allergy. It took me a year to figure that one out. The latest news is that I can't eat bananas. They give terrible (and I mean TERRIBLE) abdominal pain.

At the moment... fingers crossed... I feel like I have things figured out. I almost hate to say that.

:D :D :D

Heather

Title: Re: Morphing MCAS?
Post by Anaphylaxing on 01/12/12 at 11:52:02

Thanks for sharing Heather!

Title: Re: Morphing MCAS?
Post by Lisa on 01/13/12 at 14:51:59

If I could give it a name, I'd call it the "What's Next? Syndrome!" for that's what I feel like when I turn around and something odd or new pops up. Although I've had issues with perfume since a child in that some kinds would give me a headache, I never reacted to it even after my masto came out of hiding. Last March, following a visit from my sister who brought some perfume with her, I suddenly had my first reaction to perfume. With my anaphylaxis I've never had vomiting, but this attack was so strong that it made me vomit and it was a huge reaction! I chucked the perfume and figured it was only that perfume (and boy did it stink too!) and didn't think another thing about it. Well, out of the blue in October I had another huge attack one that made me struggle 4 hours with syncope. I really frightened me, that's how strong the attack was. My youngest had spilled some perfume in the house and I thought, okay, the concentrated fumes is what overwhelmed me this time and didn't think anything more about it to the point that a few days later I put myself into an attack by using some of my own perfume, not thinking that I would react!! Then, two days later my daughter used some of her perfume and there I was fighting the anaphylaxis all over again with another big reaction!!

I've now noticed that whether I'm in an elevator or in a store, if there is any strong perfume around I begin feeling it and must get out of the way or do something to clear the air or I'm in trouble!!!

How? Why? I've not a single clue! What made things change? I was fine last year and LOVE perfume, but I don't dare use any, even with deodorant. And yet, why don't the scents put into hairspray or cleaning products seem to bother me? What about shampoos? Some bar soaps can do it though and I can't figure that one out either!!

I wish I knew myself, Ana, why this happens to us and if there was any way to revert it, but I have a feeling that not even the authorities have figured this one out!! It's just one of the quirks of masto and we have to somehow figure out how to live with it. :-/

Lisa

Title: Re: Morphing MCAS?
Post by Anaphylaxing on 01/13/12 at 15:27:11

Thanks for sharing Lisa! It is such a bizarre illness! But, we are lucky to be alive!! 8-)

Title: Re: Morphing MCAS?
Post by missybean on 01/21/12 at 04:28:54

Ana, I had to comment on this since olfactory hallucinations were one of my first symptoms. I used to smell smoke when there was no smoke, cigarette smoke smell so strong I would gag, almost like someone would have blown it in my face. Wanna talk about weird. I thought I was losing it. Lol! Anyways I mentioned it to my ENT doc and he said it is fairly common in people with chronic sinusitis which I had. I figured out dairy was a trigger for me, when I stopped dairy it got way less. Then when I started using my sinus rinse it got even better, also started Zyrtec at that time. All those thing combined help tremendously. Now if I smell smoke I notice it when I have snuck in a no no food or I have a cold. I read up on the olfactory nerve and olfactory epithelium tissue and my thought was if there is mast cells in nasal tissues why could there be mast cells in the olfactory tissue or they could be close enough so when and if they degranulate they dump histamine and cause inflammation and then maybe it messes up that olfactory nerve signally properly. Just my thought not saying its true.
Melissa

Title: Re: Morphing MCAS?
Post by Julie M. on 01/21/12 at 04:57:10

Yes, yes, yes! It's really crazy!

When I had the bad reaction to lidocaine last month, I was stunned. I've had lidocaine for years and never reacted. In fact, I had it just a few months ago and was fine. Go figure!

I call my MC issues the "Roulette Wheel of Symptoms". You never know from day to day (hour to hour!) where that little ball is going to land on the wheel and what will be the corresponding symptom.

It's frustrating, but somehow you just learn to live with it. Thank goodness I have an understanding family.

So glad others here understand!

Julie