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.

Hi bhpen and welcome to the board!
Im sorry youre going through so much now. Yes it does sound like you have a mast cell problem but please dont let it scare you--thats why we are here, to help you navigate the how-to's so that YOU control your life, a disease doesnt.  Our saying is "Ï have masto but it doesnt have me."  Its true.

The more you learn about the disease and the medicines, the more of your life you take back.  Have you started a low histamine diet yet??  What meds are you on now?? How do you feel each day? Do you keep a health diary each day?  Just take your time learning and asking questions, we're here to back you up!
hugs
Ramona

PS Premedication and Emergency protocol is also on this board under "Emergency Protocols and Information"