Odds n Sods

I can’t come up with an original Jak post for you at the mo because I’m too exhausted, but I’ve read some interesting articles lately (well, when I say read I mean skimmed through in a dizzy foggy haze!) which I thought I’d pass on.

Ehlers-Danlos

This link was posted on my Facebook wall by my lovely friend Daniel, who doesn’t have EDS himself and which goes to show how thoughtful he is to see this and think of me 🙂  It’s about the celebration of our lives as disabled people against all the odds.

M.E.

The inspiring Jen Brea is currently at the Sundance Film Festival promoting her film-in-the-making ‘Canary in a Coalmine’ about the stark realities of life with M.E.  For anyone who wants to follow developments Jen has a Facebook page and Twitter feed.

I also loved the ME Association’s facebook status update this week:

MCAD

This new paper on Mast Cell Activation Disorder appeared in the Allergy & Clinical Immunology Journal (Vol 27 No.3) in September 2014 and was written by the excellent Dr Afrin.  I’ve copied all the symptoms listed in this article (see below) which can indicate MCAD and marked the ones from which I suffer/have suffered in red.  Out of the possible 143 symptoms associated with MCAD I have/have had 75 – on top of all my M.E. and Ehlers-Danlos symptoms.  When you look at it in black and white like this it does make me mad that I’m this sick and yet just left to get on with it – no consultant involvement and I maybe see my GP twice a year for a sick note for my insurance company and a repeat prescription!

Mast Cell Activation Disorder symptomsMast Cell Disorder symptoms2Mast Cell Disorder symptoms3

 

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9 thoughts on “Odds n Sods

  1. Robin

    Aww, how perfect is the little cartoon. Thank you (and Daniel) for sharing the info this morning. Take care of yourself today. Just breathe!! Peace be with you.

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  2. Alan Lewis

    Hi again! The info on MCAS/ MCAD is great – The more I read, the more convinced I am that my wife has this. Her symptoms match this more closely than anything else that I’ve read. We’re Stoke-on-trent based.. and waiting for a referral appointment at the EDS clinic in Sheffield.. Who was it who finally diagnosed your MCAD? Thanks. Alan.

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    1. bertieandme Post author

      Hi Alan

      The only person I’d personally recommend seeing re MCAD is Dr Seneviratne in the Lindo Wing at St Mary’s in London, though you have to pay privately to see him as he’s not funded to treat MCAD on the NHS. It’s expensive and my diagnosis alone cost me £900 – I can’t afford any ongoing care with him and am too ill to keep making the 300 mile journey to London 😦 I blogged about my appts here https://mastcellblog.wordpress.com/2013/09/25/appointment2/ and https://mastcellblog.wordpress.com/2013/12/11/diagnosis/. I think you can see Dr S without a GP referral, though my GP was happy to refer me and it does help to have a GP involved as they can arrange lots of routine and allergy testing on the NHS before you see Dr S which makes the appt cheaper. He gave a talk on mast cells disease in EDS at the recent EDS UK conference in Solihull so is well aware of the link and has many other EDS/MCAD patients.

      Some people with Ehlers-Danlos see Dr Grattan regarding MCAD, also in London. The good news he’s available on the NHS, the bad news is he seems to have some very strange ideas regarding MCAD and doesn’t do any lab testing so diagnosis is rather subjective. You must have a GP referral to see him.

      I’d be interested to hear about your appt in Sheffield re EDS when you’ve had it as I don’t know any adults who have been there. The only other EDS team is at UCLH and they are quite clued up now on mast cell disease in EDS and would refer you to Dr S if they suspected mast cell involvement.

      Good luck
      Jak x

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    1. bertieandme Post author

      Not surprised re the waiting list Alan. Within 6 moths of Dr Ho opening her hypermobility/EDS clinic in Manchester hospital she had a 14 month long waiting list and had to close to new referrals to deal with the backlog. There’s *nothing* rare about Ehlers-Danlos – it just isn’t diagnosed and the tiny few clinics that deal with it are just overwhelmed!

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  3. d

    Hi Jak,

    THANK YOU for posting the information about Dr. Afrin’s article. I felt like I was reading an article about me. I have forwarded it to family members who have recently started questioning if I am really ill or if “it’s all in my head”. After more than a year and half (a drop in the bucket compared to you), I think if I could “talk myself out of it” I would have done that by now. No one WANTS to be chronically ill.

    As an aside there is a new film that is out or was out recently called “Cake”. It stars Jennifer Aniston as a woman dealing with chronic illness. I have not seen it but I am very curious to see how chronic illness is portrayed.

    Wishing you a “normal” day.
    d

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  4. d

    Hi Jak

    Something I discovered recently is that there is an apparent difference of opinion in the world of mast cell disorders. As I said above, the review article by Dr. Afrin reads like my own case history. It explains everything that has been happening to me. I also have multiple symptoms in almost each category of his list. With other diagnoses I have come across there are always aspects of my illness that are not explained. However when I took this article to the specialist in my area, the diagnosis of MCAS was dismissed out of hand. It seems there are those in the mast cell world that hang their hat on elevated serum tryptase level as a marker for any mast cell disorder. Then there are those, like Dr. Afrin, who believe that for some it may in fact be the overall recruitment of mast cells in response to a trigger and not the over-proliferation of them in the body. So, for now I am in limbo while I decide if I pursue this somewhere else. It is about finding a label for what has turned my life upside down as well as the very remote possibility that there might be something that could be tried that will improve my quality of life.

    I get frustrated when I read about people who live in other parts of the country who describe the same symptoms I have experienced and received a diagnosis… over here it appears it is also about where you live.

    d

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