Hi all,
This is my first post. I'm a little unsure, frightened and nervous - so treat me gently!
I'm a 51 year old British Army Officer with a strange clinical history going back three and a half years. I wont labour on the story, suffice to say I've had a range of unusual skin conditions that began 6 months after I was fitted with an artificial cervical disk following a trauma injury (C5/C6). I had everything, eczema, pomphlux, urticaria, small papules on my ankles and chest - nothing seemed to get rid of the skin problems.
In Mar 11, it was decided that there may be a link between the titanium disc (circulating particulate wear debris?? and auto immune reaction???) and the skin problems (and also the disc was far from pain free) and I was scheduled to have the disc removed in Sep 11.
Out of nowhere in Jun 11, I developed marked dermagrahisum; getting out of the shower and towelling down left crazy red stripes that would dissapear after about 5 minutes - and they were (are still itchy). I also developed what could only be described as an occasional grumble under my upper right quadrant.
When I went in for the surgery in Sep 11, they took bloods and a biopsy. Although my skin settled down after they removed the disc, the biopsy was inconclusive but my blood showed a high eosinophil count of 2.9.
There was lots of discussion over what was causing the dermagrahisum and the high eosinophil count. I was seen by three dermatologists, and had more allergy testing, more biopsies before eventually being referred to a Consultant Immunologist, who order a complete work up/bloods etc (and a 5 day course of prednisolone).
2 days later I had a phone call from the consultant who said your eosinophil count is still high, and you have something called an elevated mast cell tryptase level (or 146) - I need to do more tests.
A full ultrasound of my abdomen last week showed no enlargement of spleen, liver, etc.
Well like many of you, I suppose, I'd briefly heard of a mast cell, but that was it. Seven days, and a good internet connection, is a powerful combination!
I've just received another letter from the Consultant:
Eosinophils 2.1 (normal range 0.04-0.44)
Tryptase 145
B12 1058 (normal range8 200-900)
His diagnosis " the high mast cell tryptase levels together with persistent peripheral eosinophillia raise suspicion of a mutation of FIP1L1-PDGFRa, but cutaneous mastocytosis cannot be completely excluded (C-KIT D816V mutation)".
I had blood taken yesterday for the two mutation tests and I have a CT scan booked for tomorrow.
To say I am worried, is an understatement. Both my mother and daughter had leukaemia and the possibility of anything of this nature fills me with dred.
So here I am. Other than my skin, and a persistent rhinitis, I am well in my self.
Everything I have read over the past few days does lead me to suspect some form of mastocytosis. I wait in trepidation!!!
Thanks for letting me tell my story.