Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Greetings from the UK http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1332949735 Message started by bhpenfold on 03/28/12 at 04:48:55

Title: Greetings from the UK
Post by bhpenfold on 03/28/12 at 04:48:55

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. ;)

Title: Re: Greetings from the UK
Post by Doozlygirl on 03/28/12 at 06:03:25

Hi. Welcome to this site. You will find great comfort, caring compadres, and lots of information, direction and guidance here. It sounds like you are in good hands, as they are running many detailed tests on you. I wanted to point out that CT contrast media and medical procedures can degranulate mast cells, so it is HIGHLY advised to premedicate prior the procedures, even if contrast is not indicated to be given. There are two different protocols out there. THe first is the REMA protocol and the second is The Mastocytosis Society protocol written by Dr Castells from Boston. You can find this one on the TMS website at www.tmsforacure.org. Sorry, not sure why the link didn't pop up.

Best wishes as you move thorugh this journey,
Lyn

Title: Re: Greetings from the UK
Post by Riverwn on 03/28/12 at 06:37:15

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

Title: Re: Greetings from the UK
Post by Lisa on 03/28/12 at 06:37:53

Dear bhpenfold,

Hi and welcome to the forum! I hope we can help you.

A tryptase over 20 ng is diagnostic for Systemic Mastocytosis. You've done enough research to have a good understanding that this must be fully investigated in your case. Fortunately you do have a high level expert in the UK. His name is Dr. Clive Grattan. He's in Norfolk and I'm going to give you his email address and ask you to write to him ASAP. Having a tryptase that high is serious especially since there is leukemia in your family. Thankfully the chances are low that you have an aggressive form of mastocytosis, but you must have this fully investigated by an expert to see exactly what your case is and to have the proper treatment. Although you have doctors which are looking into this and they seem to be careful, this still is not a disease that you want to be in the hands of rookies. You need to speak with Dr. Grattan and have him investigate you.

If I had my druthers, however, and the $$ ability to do this, I'd go to see Dr. Escribano in Spain at his center for mastocytosis research in Toledo. You can see Dr. Escribano himself and you can see him through the EU health system I believe. Although it may be a distance, his center specializes in mastocytosis and their testing is extremely reliable.

I will send you the emails to both of these doctors and you can write to the both of them and tell them your story and see what they have to say. I have no doubts that they will answer you as soon as they can.

I hope this helps!

Lisa

Title: Re: Greetings from the UK
Post by Riverwn on 03/28/12 at 06:40:34

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

Title: Re: Greetings from the UK
Post by bhpenfold on 03/28/12 at 07:15:36

Thank you so much for all for your kind words and thoughts.

I'm kinda resigned to the fact that it is most likely to be systemic mastocytosis. There is enough litererature around that looks at individuals exhibiting both eosinophila (no end organ affect) and high mast cell tryptase (http://bloodjournal.hematologylibrary.org/content/101/12/4660.full for instance.

Currently I'm taking fexofenadine, ranatidine and singular. I suspect once I see the consultant again with an update of the diagnostics, he will add something like Sodium Cromoglicate (Nalcrom) or Ketotifen.

I'll let you all know how things progress!!

Brian