Symptom photos

This is just a quick post to say that I’ve added two new pages to my blog.  I’ve used various photos of the symptoms of my diseases over the years in lots of different blog posts, so thought it was time they were all put together in one place.  They can now be found under the ‘My Story’ menu heading.

Photos of hEDS symptoms here:   https://mastcellblog.wordpress.com/journey/edsphotos/

Phots of MCAD symptoms here:   https://mastcellblog.wordpress.com/journey/mcadphotos/

I haven’t included any photos of M.E. because there is basically nothing to see 😦  Plus I don’t like having my face online because there are some very strange people out there who illegally  download pictures without my permission and they could end up anywhere for any reason.

Must dash, my cleaner is due shortly and I need to tidy up because my house is so messy it looks like I’ve been burgled 😉

Advertisements

6 thoughts on “Symptom photos

  1. Glo

    Thank you for posting the mcad pics. These things are exactly what happen to me. I think its always in the back of my mind that maybe I’m just overreacting and I’m fine. This probably is from years of being told that by a herd of doctors. The heat induced stuff is always the most impossible for people to believe. At least I know there is one person who gets it. Thank you for sharing these pics

    Like

    Reply
  2. Sarah

    Quick question, can you just have some symptoms of hEDS. I have all the same features except hypermobility in my arms and hands, but I do have the loose stretchy skin. My hypermobility seems to be mainly my hips, knee and feet and some of my ribs.
    Thanks for posting the photos, being a warm day, out came my rash on my thighs just like your photos. The raised impression of clothing, cushion cover etc has got worse. It’s really good to see and compare. I’m in no doubt now I have mcad. Ironically it was Dr Grattin (I think that’s what it was) who you didn’t recommend was who I saw

    Like

    Reply
    1. Jak Post author

      HI Sarah

      You don’t have to have hypermobility in all your joints – four or more is considered a pass, *so long as* you have other symptoms. The diagnostic criteria for both EDS and HSD (hypermobility spectrum disorder) are discussed in this youtube webinar https://www.youtube.com/watch?v=3iw4uJeAKj8&feature=youtu.be

      I’d be interested to know how you got on with Dr Grattin – lots of people ask me about him but I have no personal knowledge and have heard mixed reviews. Has he diagnosed MCAD for you and if so how? It would help me help other people if I knew I could recommend him.

      Jak

      Like

      Reply
      1. Sarah

        I saw Dr Grattin at least 5 years ago. I was referred to him as I kept coming out in rashes. I actually saw a junior doctor at first, and she asked me what else was wrong. When I went into my symptoms including severe stomach pains that couldn’t be explained (it was the same as gallstone pain but I’d had my gallbladder removed years previously), IST, ME and fibromyalgia, the junior Dr went off to get Dr Grattin. He was a lovely man and was very thorough about testing me for mastocytosis, but although I did get a rash when ice was put on my skin, slightly raised skin when he marked it which nearly lasted for the 10 mins. The rash was really bad with heat but they just could not get me warm and even put me in a hot bath but that day, my body just wouldn’t play ball and get warm so no rash appeared. I had 1 mark on my back but they weren’t 100% sure it was a lesion. The tryptase test was in the normal range so he said I didn’t have mastocytosis.
        I’d read about Mcad but I think he didn’t recognise that, but as I said, it was at least 5 years ago, maybe even 7 years. When I get the pain starting in my stomach, I coincidentally took some piriton, which worked at stopping the pain but not all the time and I end up at A&E. I found out that morphine and codeine made it worse and were triggers.The pain can be set off by drinking plain water so I can’t drink it now, i have to drink hot drinks. Water burns my skin in between my shoulder blades. Being in the sun can make my back feel like burning water is being poured on it. I get the same marks like your photo of your stomach when I come into contact with most plastics. I should go back to the Drs really but my hysterectomy has left me bedrdden in pain and with swelling that hasn’t gone down after the op, and they don’t know why.
        So my experience of Dr Grattin is he’s a nice man, very thorough with regards to a mastocytosis diagnosis but I don’t know his attitude towards mcad so I don’t have a diagnosis.

        Like

        Reply
        1. Jak Post author

          Thanks so much for that Sarah, very useful. Your experience tallies with what I’d already heard, ie. that Dr Grattan is very nice but doesn’t really recognise MCAD. I suppose that makes sense as he’s a dermatologist, so is much more likely to be knowledgeable about Cutaneous Mastocytosis which is primarily skin related, rather than MCAD which is a systemic disease. Jak

          Like

          Reply

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s