Mastocytosis and me...

I have been diagnosed with Suspected Systemic Mastocytosis.

I am blogging about it for a few reasons, one is I love blogging and another is that when I was initially faced with this with a diagnosis I searched for blogs and info and didn't find too much about what it's like to actually have this condition. It's very rare. I believe only 1 in 500,000 people are diagnosed with this.

Hopefully this might mean people will get a little bit of info and a whole lot of hope.I'm not going to go on about it but if anyone reads this and doesn't feel alone, I'll be happy.


It all started when I had a meal with some friends to celebrate a birthday. We had tapas and a few drinks. I went home and went to bed I woke up a few hours later with the room spinning and feeling dizzy and sick. I rushed to the bathroom and threw up and then when I looked in the mirror.... eugh! my face was badly swollen and looked blue, sort of bruised, almost unrecognisable in fact. And there was an angry looking rash down my arms and across my chest. Weirdly I didn't panic, I just took some pain killers and an anti histamine for the rash and woke my fiance up

His face was a picture but to be fair his fiancee did look like a swollen smurf!

Note to anyone reading, if this happens to you get yourself to a doctor ASAP. I was very silly. I just didn't go to A&E as I didn't think I had problems breathing and was a bit embarrassed as we had been drinking, but I hadn't drank enough to be terribly drunk certainly not enough to warrant room spins. We decided to see how I was in the morning so enough alcohol had been consumed to make daft decisions. But the next day I did take photos as I didn't think anyone would believe me, which was such a good thing to do as it meant when I was explaining it to GP's etc I could show them. In fact if you get any rash, take a photo to show your GP.

To cut a long story short I was referred by my GP to the Anaphylaxis clinic and suddenly it all got quite serious, where I was given the skin prick test for allergies. They took some blood and I was sent away thinking that was weird but the end of it.

I was also getting extremely tired and feeling unwell for a few months prior to this. I mean I was exhausted. Which again I put down to something else my underactive thyroid....it's fun being me I tell ya!! The GP upped my thyroixine. I also had severe headaches which were being treated but I really did feel awful.

Over Christmas I was recalled to the clinic as my tryptase levels were elevated. This time I was grilled on my past medical history, I have a history of flushing which I hadn't even given a second thought to, I had a upset stomach a lot which I had put down to a medication I was on for PCOS, and I did have various aches and pains which I just ignore. The whole thing added up to Mastocytosis.  Bloods were taken again and my tryptase was still elevated.  I mentioned that I was exhausted and the doctor said no wonder and suggested I stay off work for a while to see how it goes. So I was referred to the hematologist.

Despite one inconclusive Bone Marrow and yet another elevated tryptase test later the Hematologist is happy to say he strongly suspects Indolent Systemic Mastocystosis.

And here we are.

I had gone to the Internet to get information on this as it's so rare the GP I saw didn't know anything about it. If you do that make sure you go to sites that are reputable like the UK Masto group. I looked on You Tube and was appalled at some of the videos there. They just made me panic as it looked like a tragedy.

Now I'm not saying having this is a walk in the park, it's not. I feel rotten for a fair bit of the time but it's not the end of the world, not for me anyway. The exhaustion and chronic upset stomach are by far the most debilitating. I just feel floored and have to go to sleep or I start to get disorientated and feel sick.Which is an odd and embarrassing feeling at three in the afternoon, even when I've slept ten hours the night before. But then I can also feel OK the next day. It's quite unpredictable, which I'm told is very common. But it is manageable.

I'll be starting my new meds on the next day or so. Here's hoping I'll feel better.

Especially as I have my wedding to get well for!!