I had my annual asthma check this week and received my first ever written action plan, which is quite something when you realise that I’ve been a registered asthmatic since the age of two. This great progress for those being diagnosed with asthma now.
My peak flow is 380, which measures my lung capacity, is great for me. I still pinch myself as I haven’t had a major asthma attack for three years now, all because I was finally allergy tested in hospital. And I definitely don’t miss the painful skin flares that can occur when triggered. It took over a decade to get those tests, and I was only tested when it became obvious that I was reacting to something in the meds, as well as nearly everything else I touched, breathed in or consumed.
This was also the reason I wasn’t initially tested because it’s impossible to be allergic to nearly everything according to most GP’s training, which is correct generally, unless you are dealing with allergens like corn, which is not in the top 14 (UK) and is likely to be in just about anything you can think of today.
Most GPs may also not be aware of Mast Cell Activation Syndrome either, as it hasn’t been officially recognised by the NHS yet, even though it is by the World Health Organisation.
The only NHS reference you’ll find to MCAS is the one featuring elite disabled GB gymnast Natasha Coates, who developed the condition in 2013.
This week I shared my post on how I reduced my asthma attacks and various other reactions during a twitter discussion online, and suggested that medical professionals might like to consider looking beyond the top 14 allergens when looking for reasons behind skin and asthma reactions. I was delighted to receive a reply from the Centre of Evidence Based Dermatology, at the University of Nottingham who said:
This feasibility study may lead to a clinical trial, we shall see. Meanwhile it is good to know that routine allergy testing is being considered as a potential area of research.
If you do have asthma one of the best books I’ve ever read on the topic is Asthma: The Complete Guide by Jonathan Brostoff and Linda Gamlin. It explains everything that your GP will not have time to in a 10 minute appointment, it was a life changer for me as it gave me a deeper understanding of what asthma is, how the meds for it work and what I could do to help myself.
Jonathan Brostoff is an eminent Professor of allergy and environmental health at Kings College, London. He is a leading expert in allergy and clinical immunology, anaphylaxis, food allergy and intolerance, and auto-immune disorders.
Highly educated, Professor Brostoff graduated from the University of Oxford before embarking on a distinguished medical career. He is a leading international authority in his field and is the author of Food Allergies and Food Intolerance, a guide to identifying and treating food allergies and intolerance.
Linda Gamlin trained as a biochemist and worked in research for several years before turning to journalism.
I said in a previous post that ill-health lead to liberation for me and here I’m going to explain why.
For many decades the only things that I’d been diagnosed was asthma and the grass pollen allergy, which made life quite a challenge as I was constantly reacting to things or experiencing symptoms that didn’t quite fit that diagnosis.
Due to many of my conditions not being diagnosed for various reasons, I had to think differently just to survive and through this I found liberation.
My medical conditions to date due to investigations mostly over the past year because the science and research is now available are: Asthma, multiple rare and common allergies, salicylate intolerance, mast cell activation syndrome, tachycardia, possible heart murmur, aura migraines and hypermobility. There are a few more tests to go but at least we are getting there now.
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My mum always said that the minute I could talk my favourite question was ‘why?’. It’s a question that has turned out to be enormously beneficial, along with another favourite ‘what if?’. Below are my top ten perks, where I explain how a chain of events involving those two questions led to freedom: Continue reading “The top 10 perks of my unpredictable medical condition that led to liberation”
My heart rate blew completely at random in my GP’s office again on Monday. No scent, no food triggers. I’d just done a quick simple demo of how hypermobile my shoulders are, which took a second and made his eyes widen.
I remain surprised every time I demonstrate something that makes a medical knowledge penny drop, because I just took it for granted for decades that these things were normal. I’m currently getting my head around the fact that they’re not.
Anyway, we were chatting and I was saying my Mast Cell Activation Syndrome doctor had suggested I be tested for Postural Orthtastic Tachycardia Syndrome and that the Rheumatologist had explained the procedure to be tested for Ehlers Danlos Syndrome. I’d just stressed the family history of hypermobility, allergies, migraines, gut issues, skin issues and our penchant for brain aneurysms again in relation to the tests, when my heart spontaneously just decided to go off on one.
He snapped on the heart rate monitor again and we both watch it click past 120 beats per minute, even though I was outwardly fine and not obviously triggered by anything. As I’ve said before I normally have low blood pressure.
Then he whipped off his stethoscope and started listening to my heart.
“I can hear a murmur,’ he says.
I thought that if a connective tissue disorder underlies everything that would make sense. Especially as I have the Walker-Murdoch sign, the Steinberg sign and Camptodactyly in the little finger of my right hand.
He put a request in for the recommended tests. Continue reading “My heartrate blew again in the GP’s office – highlighting a possible heart murmur”
As the temperatures increased to 30 degrees celsius and above, I decided to try and introduce an ice cream to my system because I’d found an ice cream that might be suitable, although me and anything sugary don’t always get on.
Sometimes it’s because the sugar is corn derived. It’s also possible that as most sugar is made in the corn belts of Europe and America, there could be a cross contamination issue, which is something to consider when you have a corn allergy like me.
I did find it interesting that Dr Heidi Collins has also flagged up sugar and sweetners, and particularly High Fructose Corn Syrup, as an issue for those with Ehlers Danlos Syndrome in the diet that she has devised. There’s also an interesting section on inflammation of the gut and dysbyosis where she raises corn as a source of the problem, as well as wheat and casein (dairy).
Which could explain what followed. Continue reading “An ice cream experiment that made my heart race…”
I’ve come to notice that a favoured fall back position for many of my friends, after they ask me how I am and I answer honestly, is to say ‘but at least you look great’.
Some people say this because they can’t think of anything else to say in response to such an unpredictable medical condition. Sometimes it’s to change the subject because the nature of the illness can feel overwhelming and sometimes they think it can’t be that bad considering how well I look.
How I present myself doesn’t match what some people believe illness should look like, and it throws them. Well, it is perfectly feasible to look good and still be sick. I should know, I’ve been masking the various forms my illness takes for decades and just getting on with many of the symptoms, until 2014 when the mask slipped for a while due to the symptoms escalating to a whole new level.
There’s no masking the moment you’re covered in hives from the top of your head to your chest. Or the moment this switches into swelling to the point that one friend asks if you’ve been beaten up because you’re almost unrecognisable. Or when you flush from your fingertips to your elbows like you’ve just dipped your arms in a vat of fuchsia dye. Or when your ability to talk vanishes in a split second because the severe brain fog has stolen your ability to form a word, let alone a sentence, as spikes of lightening take over the left side of your brain, temporarily immobilising you and destabilising your spine.
My GP has a different term for me, he calls me stoic. Since we’ve connected the dots between my long symptom history, the relatively new condition of Mast Cell Activation Syndrome and related co-morbidities, we’re both beginning to understand the scale of what I’ve been dealing with over the years before the science caught up and gave my experience a name.
Here are my top ten reality checks behind that illusion of wellness: Continue reading “The top 10 reality checks behind my illusion of wellness”
In this memoir Pamela Hodge shares her experience of mast cell activation syndrome (MCAS), from the moment she first started noticing symptoms, to diagnosis and treatment plans, to how she found and dealt with triggers, to how she copes today.
Pamela makes it clear that she is only an expert on herself and not others, but does demonstrate how to think your way from a symptom to a potential trigger, and then how to work out if that thought is correct.
At the start of each chapter is an apt quote for each story from Pamela’s mast cell journey. She shares a list of symptoms within the condition and has marked the ones that applied to her with a plus sign. She describes how a surgical procedure may have been the tipping point for her condition 15 years ago, the cascade of symptoms that followed, along with the tests that she had that eventually led to a diagnosis of mast cell activation syndrome.
Pamela does find the humour in many challenging situations and there are also moving passages too, like when she describes how one of her dogs patiently waited outside her clean room for over a year, as Pamela went into isolation periodically to manage her symptoms.
What Pamela explains well is Continue reading “This week I read: My Crazy Life: A Humorous Guide to Understanding Mast Cell Disorders by Pamela Hodge and Daniel Hodge”
I had both feet in the sea for a while thanks to a friend who decided that the best thing we could do after my latest hospital check-up was head to the coast.
It was bliss to go for a paddle for the first time in two years. I collected sea shells to remind me of the afternoon.
The check-up went well, I think. I’ve been advised to move to a new Mast Cell Activation Syndrome (MCAS) doctor at some point because all the standard meds for the condition contain corn derivatives – and I’m allergic to corn. The doctor I currently have thinks I might be a candidate for another treatment option that the new doctor has access to, we’ll see.
I’m fortunate I think in that the diet I devised for myself in 2015 contains natural sources of Quercetin, Vitamin C, magnesium, vitamin D and B vitamins, among others, which all seem to be a factor in reining in symptoms of Mast Cell Activation Syndrome, especially as nearly all supplements and manufactured vitamins tend to contain corn.
Not everyone with MCAS can source what they need via food, as some people are currently surviving on fewer than 10 foods, while others have to be tube fed. Some people do take supplements and vitamins and can tolerate the MCAS meds, while for others it’s a process of trial and error. Each person has to take the route that’s right for them and it can be hard going at times. As for me, I have 17 safe-for-me foods, plus a couple of other options that I can tolerate as long as I don’t have them more than twice a week. I also know that if I didn’t take my relatively safe-for-me antihistamine every day my symptoms would soon ramp back up, despite all the avoidance tactics.
In the meantime my current MCAS doctor asked me if I’d like to be part of a Mastocytosis study. I said Continue reading “A visit to the seaside and an invitation to join a Mastocytosis study”