Freckles & blisters

Over the last 10 years my skin has started doing all sorts of weird things.  Despite this, when I was being investigated for Mastocytosis in June my skin was never once examined.  It seems that, according to the NHS, if your tryptase level is normal you can’t possibly have any kind of mast cell disorder.  Which would be fine, if only it were true.  Cutaneous Mastocytosis doesn’t involve elevated tryptase.  Neither does TMEP (Telangiectasia macularis eruptiva perstans).  And neither does Mast Cell Activation Disorder.

I currently have 9 blood blisters on my skin.  They’re all on my chest and stomach, nowhere else.  They’re only small and don’t come and go – I’ve had some of them for years.  But what they are doing is increasing.  Here are some photos:

Photo of blood blisterphoto of blood blisters

Another thing that puzzles me about my skin is that brown looking weird rash you can see on the photo on the right.  My whole chest looks like that.  Maybe it’s just sun damage, which might be plausible if I’d been abroad any time in the last 17 years (which I haven’t) and didn’t live in the far north west of England where it rains 340 days out of every 365!  Trust me when I say sun-block isn’t something the local shops sell a lot of 😉 .

I don’t think sun damage can be blamed for my ever increasing freckles either, some of which are quite big.  Here’s a photo of one on my neck that I’ve had since I was a baby – I have a similar one on my side:

photo of possible freckle

And here’s a photo of the top of my back – again you can see clumping of ‘freckles’ into quite large areas of pigmented skin.

photo of possible freckles

My moles also seem to be increasing at an alarming rate of knots, and I have 2 on my back that sting if I rub them, a bit like the sting you get from nettle rash.

And then, of course, there are my much talked about bug blisters that I don’t think are bug bites at all (I have yet another one under my boob this week, and it’s autumn here and I only ever go outside fully kitted out in jeans, polo-neck sweater and anorak!).

Photo of bug bite?

Maybe all this is perfectly normal in a middle aged woman, which is what I constantly tell myself along with the mantra to “stop bloody fussing”!  I’d be more inclined to listen to myself if my skin didn’t itch quite so much and I wasn’t covered in welts from all the scratching.  You do have to wonder what’s really going on, and I’ll be broaching the lack of skin examination with Dr Seneviratne when I see him for my follow-up appointment next month.

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15 thoughts on “Freckles & blisters

      1. addercatter

        I have the red blood blister things too. The first one appeared on my forehead about 5 years ago. I have several more now… on my neck, back… I’ve never asked my dr about it. I remember my grandmother having them too. She is the carrier that my EDS comes from. Her mother likely had it too, but that was too long ago for such diagnosis to be made… but she had many of the symptoms and died in her early 50s.

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  1. Jodi Owen

    Hi Jak,
    Your photographs could easily have been taken of my body! I too have red blood filled bumps all over my body. I saw a Dermatologist last year who specialises in Mastocytosis (Dr. Clive Grattan – Guys & St. Thomas) and he feels they are Campbell de Morgan’s. I’m also covered in brown patches which I thought might be urticaria pigmentosa but he said he’s fairly certain they are lentigines, associated with sun damage. Then there are the red spider veins on my skin and in my eyes (very similar to a photo you posted) that I thought might be associated with Telangiectasia macularis eruptive perstans (TMEP) but he took no notice upon examination. :-/ I still suspect they are connected to my symptoms based on the images I found here: http://www.flickr.com/photos/mastocanada/sets/72157622242515904/detail/?page=2 but when the expert in the UK says otherwise, who am I to question?!
    As if…
    I’ve never been one for taking the ‘authority’s’ last word. If I were, I’d probably be dead right now! Besides, doctors are only as knowledgable as their experience and exposure allows them to be. Many of us living with obscure chronic illnesses end up far more knowledgable than the average doctor we might encounter. (How many have you had to ‘educate’??) Considering I spent years researching and discovering all of my conditions of POTS, EDS, Tethered Cord Syndrome, and MCAD, and seeking out specialists who (thankfully) confirmed, I have reasonable confidence in my instincts.
    Regardless, I’m on the only treatment options available anyway but something in me still wants to know…just stubborn, I guess. 🙂
    Jodi x

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    1. bertieandme Post author

      Thanks so much for that Jodi – really interesting! I’d never heard of Campbell de Morgans. I told Dr S I’d never had my skin examined, and he just said if I was worried to get my GP to refer me to my local dermatologist – my GP is sick to death of referring me to people and probably wouldn’t even consider it, so I’ve not bothered asking. Plus, my local dermatologist is probably going to be crap so I’d need to see a dermatologist well versed in mast cell disease and we all know how rare they are 😉 I might consider going privately if my spots get any worse though x

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  2. JBL

    Any chance the last spot could be shingles?? My mom’s looked like that. I, too, have these red spots. 3 total. Just got a new one this week on my abdomen. I have terrible mast cell reactions. Interstitial cystitis, flares to hormone shifts, and I am highly allergic to mold, soy and a little less, but still miserable, to gluten.

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    1. bertieandme Post author

      Thanks for the comment JBL. Funnily enough my Mom had shingles last year and you’re right they do look a bit like the blistery spot in my post. But they tend to blister right along a nerve rather than randomly all over like my blisters. My Mom was in horrendous pain with her shingles and ended up on Pregabalin to control it, plus she also felt quite unwell with it and had a temperature, none of which I get thankfully. Sorry to hear you have mast cell issues – it sucks 😦 Jak x

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  3. Marie

    Hi! Sorry to reply to an old post but I have just discovered your blog – it was MCAD that led me here. I am in Scotland and my story pretty much mirrors yours to a ‘t’. I have seen the one ‘expert’ here at the anaphylaxis clinic and was diagnosed as a ‘histamine releaser’ – life has been hellish and I am not getting any help or any better (currently taking 30mg cetirizine daily, was taking zantac until 8 weeks ago, also tried montelukast). I am wanting to travel down to see Dr.S. after all I have read on your blog – I think he is now my only hope. If it’s ok, could I maybe rack your brains about a good hotel to stay in? This is going to seriously skint me but I feel I have no other option – I am truly desperate! Much love to you and your wee dog (oh, and I have many of the Campbell de Morgan spots, too – I am 45 btw)!

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  4. Jodi Owen

    I was pleasantly surprised to see that, after taking Nalcrom for the past 6 months, the red patches on my face have all but vanished! They looked like tiny clusters of spider veins, one under my eye, the other between my top lip and nose. I’d like to go back to Dr. Grattan and show him the evidence (documented in photos). It won’t change anything for me but I’d like him to have more knowledge before he dismisses potential cutaneous signs with patients in future!

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    1. Sharon Brooks

      Hi, I too could have been you in the pictures. So far it turs out I have Vitamin B12 deficiency. I am going to see in endocrinologist in a couple of weeks to see if I have Addison’s disease. My GP has had me on antihistamine for montths which has helped with the sensation. But being as it looks like it is something else, I hope to be off them in a couple of weeks. I am 49, so am middle aged, B12deficiency is due to Epilepsy drugs. Praying they find answers to every bodies problems. As the worst part about this is feeling like no one believes you and you are going do dally. So with you in thought and frustration if not the same outcome. Sharon

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  5. Jerry

    My wife had one of those red blisters on her breast, and the Dr. removed it. Never came back. Our 7 yr old son now has one on his shoulder. That’s how I came across your site, researching it. As for your rashes, I sure do think that you are allergic to some things in your diet or in your detergent or both. The skin will try to expel certain things if your body cannot eliminate them properly using normal channels.

    Check out the website called doctoryourself. I found it years ago and it literally changed my life. You will love it.

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    1. bertieandme Post author

      Hi Jerry

      I already have my diagnoses and unfortunately only a small percentage of Mast Cell Activation Disorder is diet/chemical related – I wish it were that simple. I have faulty mast cells because my connective tissue is faulty due to having Ehlers-Danlos Syndrome, which is genetic and currently incurable. I can manage my Histamine Intolerance through diet, but while my connective tissue remains faulty my mast cells are going to remain faulty and there’s not much I can do about either atm. So although it looks like I have allergies I really don’t – in fact my allergy load as tested by the Immunologist is very very low, which is how I came to suspect MCAD in the first place.

      Jak

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  6. Amy Estoye

    Just in the last couple weeks I have had what looked like a blood blister and now a raised red blister. Both on my left arm. I have no idea what triggered them. I am newly diagnosed with mast cell disorder and am leaning from your posts. Thanks for sharing. It’s very helpful 🙂

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