Tag Archives: MCAD

Chronic allergic reactions

I hope I make sense in this post because I’ve not had much sleep.  My flippin’ neuropathy is ridiculous atm and I’m stinging and burning in equal measure – I blame the menopause but in reality it could be anything that’s set the flare off.

Anyway, I digress.  Following on from my anaphylaxis post I wanted to talk about chronic reactions, including prolonged anaphylaxis which you don’t seem to hear anything about.  Doctors seem to be taught that if a patient is in anaphylaxis you prescribe Benedryl and within a couple of hours the patient is good to go.  I sodding wish it were that simple!  For a start I’m allergic to antihistamines, and for seconds my longest anaphylactic reaction lasted for 3 weeks :-/

It started with my nemesis – drugs.  I was prescribed a new medication (I’ve reacted to so much I’ve forgotten which drug, but I suspect it was an antidepressant to help with pain and sleep).  I had the usual anaphylaxis symptoms which I talked about in my anaphylaxis post, for which I didn’t even bother ringing my doctor as we had no idea at the time I had MCAS and I was either treated like I was nuts or simply having a panic attack, and I just waited for the reaction to pass.  But the symptoms didn’t abate.  The pounding palpitations, muscle spasms, oesophageal spasms, retching and profound exhaustion just kept on going.  And going.  And going.  After 3 weeks of barely sleeping, barely eating and with my heart running like Usain Bolt 24/7, the pain in my chest was so bad it felt like I was being stabbed with a bread knife.  At 10pm one evening I rang the non-emergency NHS number 111 and was told I needed an ambulance in case I’d had a heart attack.  I knew I hadn’t had a heart attack, but was so ill I reluctantly agreed.  I was carted off to hospital, in the snow, at midnight, alone and in my pjs, only for them to tell me after 6 hours in A&E that of course there was nothing wrong with my heart.  No reason given for my symptoms and at 7am in the morning, in my pjs and with no money, I was discharged with no way of getting the 30 miles home.  The reaction did finally settle down, but I was really unwell and mostly bedbound for 6 months afterwards – anaphylaxis and M.E. don’t make good companions.

Oh, how I wished I knew then what I know now.  In particular, I wish I’d had my tryptase measured during any one of my two dozen anaphylactic reactions!  These days, of course, I’m very careful to avoid my triggers and thankfully haven’t had a serious reaction since I was diagnosed with MCAS so it’s not been possible to measure my tryptase when it’s elevated.  In any event, I’m not sure how I’d go about it.  I live alone 7 miles from my nearest health centre and when I’m in anaphylaxis I’m fairly sure it’s not safe to drive even if I felt well enough (which of course I don’t).  So how exactly would I get to have my bloods done?!  Do medics who tell you to have your tryptase measured during anaphylaxis even think about the logistics of that?

On top of anaphylactic reactions, I also have chronic allergy symptoms including:

  • Hives, which appear randomly and which last for weeks, sometimes months on end.  One of my triggers for those is stress, but it’s almost impossible to know what else sets them off.   I also get random red marks, rashes and skin blisters on top of my ever-present dermographism.

    Hives caused by emotional stress

    Hives caused by emotional stress.

  • Migraines.  One of my biggest triggers are my hormones, so it will be interesting to see what happens after menopause as they are currently less frequent than they used to be.
  • Flushing.  Much better since going on a low histamine diet, but tiredness, emotions (good or bad) and over-doing it all cause me to go beetroot red.  Here is me last week driving home in the car, way over-tired and with my brain function deteriorating by the second:
    Flushing car
  • Sneezing.  I’m mildly allergic to my dog which I’m sure doesn’t help the situation but doesn’t account for the periods of acute sneezing which seem to randomly come and go.
  • Itchy skin and scalp.  I itch all the time, which could be down to just about anything.  If it were my washing detergent it wouldn’t affect my scalp, just in case anyone was thinking that.
  • Nausea and colicky stomach pain.  I have periods of both and can’t tie this in to any particular food.
  • Constant peeing.  I know when I’m in a ‘good’ spell MCAS-wise because I don’t widdle every hour on the hour.  I’m currently in a ‘bad’ spell and was up 3 times in the night to pee.

I have all manner of other issues like profound fatigue, brain fog, pain, muscle spasms, constipation, insomnia etc. which could be MCAS related but could also be hEDS, dysautonomia, M.E. or menopause-related – it’s impossible to separate symptoms when you have a multitude of illnesses.

MCAS knocks what most physicians are taught about anaphylaxis on the head.  In addition, one of my readers brought up an important issue – that of anaphylactic reactions v anaphylactoid reactions.  Anaphylactic reactions are caused by an IgE mediated event, a peanut allergy being a prime example.  Anaphylactoid reactions are caused by non-IgE medicated events, and MCAS would come under that umbrella.  Whether your allergy is IgE, or non IgE, mediated is however mostly irrelevant because both can cause anaphylactic shock.  Despite that, I have discovered that doctors do tend to think that anaphylactoid reactions are less serious than anaphylactic reactions and when they already misunderstand MCAS or, worse, know zero about MCAS and simply think you’re hysterical or anxiety-riddled it can cause no end of problems in accessing appropriate medical care.   The World Allergy Organisation recognized this and in 2018 changed the term ‘anaphylactoid’ to ‘nonimmunologic anaphylaxis’ in an effort to re-enforce the seriousness of non-IgE reactions and their potential to cause life-threatening shock.

A reaction doesn’t have to happen instantly and immediately cause you to become unconscious for it to be very serious indeed and if you have, or have had, any kind of anaphylaxis you need to make sure this is clearly stated in your medical notes.  MCAS can be an escalating illness, I know mine has been, and just because your anaphylaxis has stopped at grade 2 or 3 in the past doesn’t mean it won’t progress to grade 4 or 5 in the future.




Weekly roundup

I had every intention of doing a follow-on post about allergic reactions this week, but time got away from me.  I’m still trying to get the house back to normal after unpacking everything from the house-move-that-never-was and it’s exhausting :-/  It doesn’t help that I’m having a huge pain flare-up, probably brought on by a combination of the stress and the never-ending atrocious weather.  The house purchase falling through also had financial implications, so I had to go and see an Independent Financial Adviser on Monday to discuss my options.

Wednesday, though, I had a lovely afternoon.  When I was at my last camera club, a speaker was arranged who I admire hugely and I was really looking forward to meeting her and listening to her talk.  But, of course, I’m now no longer at the club so couldn’t go along!  However, a friend of mine arranged for the speaker to come early and we met for a coffee, eventually having to be kicked out of the cafe when it closed 😀  We got on like a house on fire and it’s just a shame she lives hours away otherwise I know we’d be great friends.

Speaking of photography, I won a silver medal in an international competition this week so that gave my flagging confidence a boost 🙂  Now things have settled down with the house I really must get back to taking some new pictures – even I’m sick of seeing my existing ones!

Friday I had my monthly lunch with 2 elderly friends who are also both into photography.  One of the guys has complex health problems and didn’t seem his usual self, so I’m meeting him again this morning for a coffee when he’s more likely to tell me what’s going on than in front of another bloke.  After that, I’m meeting my bestie for lunch which I’m looking forward to.  This week has been much more sociable, which I needed.  With the weather being so awful for weeks now and everyone staying at home I’ve barely seen anyone and have felt very isolated.  Spring can’t come soon enough.

It’s during times like this that my little dog feels like a gift from Heaven.  He gives me a reason to get up in the morning, is the only living creature who ever touches me (I love his furry cuddles, even if they make me sneeze), I talk to him like he’s human (and quite like the fact he doesn’t answer back 😉 ) and he’s just my ever-present faithful companion.  He’s ridiculously hard work to look after for a sick person, costs me a small fortune and talking him out recently in the pissing rain and howling gales has been absolutely no fun at all, but he is still the light in a sometimes otherwise dark life.  I love you Bert, my “little angel”.



Weekly roundup

I’m not gonna lie, I’ve had a shit week.  Britain has been battered by endless storms and flooding and at times being cooped up in the house in the constant gloom, listening to the howling wind outside and the rain battering my windows, has felt oppressive.  I feel like I can’t breathe and having a power cut didn’t help.  They happen so often here that I have a whole cupboard dedicated to survival, so I got out my little camping stove and placed it on the hob in the kitchen to make a brew.  Five hours later the leccy came back on and I could smell burning, so I go into the kitchen to find the gas cannister bubbling away like a witch’s cauldron.  I’d inadvertently left the hob ring on and it was merrily boiling the gas inside the camping stove – a few more minutes and the fucking thing would have blown to kingdom come 😮

I had a period out of the blue again this week.  41 years of menstruating is enough for anyone. Please God I beg you, if you ever cared anything for me, make them stop.

Despite the storm and the fact the main road was closed, I still made it to my camera club on Weds night.  I needed to get out of the house and to mingle with other human beings.  The drive back over the mountains at 10pm in the dark, wind and lashing rain was hair-raising though and I’m not sure I’ll be doing it again in a hurry.

Friday, I took my Dad back to Hexham hospital.  He desperately needs his other hip replaced now, but had to see the consultant for this to happen.  A three hour journey, with my back, hips and shoulders killing me, for a four minute appointment.  Why on earth can’t doctors make use of skype or the phone – he didn’t need to physically see my Dad and it is the 21st bloody century!

As I am now staying put in my cottage, I need to spend some money on it.  In particular, I need a worktop in the kitchen I can sit underneath to prepare food as standing is just too painful.  I had an empty space under the window, so toddled off to Argos and bought myself a free-standing breakfast bar.  It came with 2 chairs, which are too low *sigh*, but I already had a taller stool I can use to sit on which gives me enough height to be able to chop.  I tried it out yesterday making some smoothies to go in the freezer and it was brill 🙂

breakfast bar

I’ve also ordered a new cooker, as mine is 14 years old and on its last legs.  I didn’t want to have to spend money on my current house when I knew I was moving, but as that is now looking like a pipe dream I’m going to have to think about the reality of staying put.

I’m having a huge crisis of confidence when it comes to my photography.  Having had success, I’m sure most people think I’m very confident in my abilities but that’s not the case.  I regularly go through periods where I can’t seem to produce anything worthwhile and everything I try goes wrong.  I look at other people’s work I admire and feel cripplingly intimidated and inferior.  I haven’t produced a good photo in months and am worried my mojo has gone for good.

I’m just very down in the dumps to be honest and the sky feels grey and without a glimpse of light.  The older I get, the less emotional energy I have to keep getting back up when life knocks me down.  One of these days I’ll just keep lying on the fucking pavement, with the litter and the chewing gum, and admit defeat.




For some strange reason, it’s never occurred to me until today that some of my readers might not know whether or not they are having anaphylaxis.  When I first started having anaphylaxis I had no clue that’s what it was, although I knew it was something pretty catastrophic and I genuinely thought I’d die (turns out that wasn’t an irrational fear!).

Grades of Anaphylaxis

All most of us know about anaphylaxis, if we know anything at all, is actually about anaphylactic shock, ie an acute, life-threatening allergic reaction which results in loss of consciousness and potentially death.  However, anaphylaxis is a graded allergic response, which can vary in severity from mild to severe.  Just to complicate matters, there is no universally agreed grading system but most anaphylaxis charts are a variant of the one below:

ana grade chart

My experience of anaphylaxis

We are all different and in typical Jak form my anaphylactic reactions don’t conform to any of the grades in the table!

Symptom 1 is a massive head rush.  It feels a bit like something has exploded in my brain with a big whoosh and my whole head gets severe pins and needles.  These pins and needles then spread throughout my body and explode with pain in my feet and finger ends.  I know, right there and then, that I am in trouble.  My brain then feels like it’s cramping, just like when you get a charley horse in your calf.

Symptom 2 is the feeling of being thumped hard in the chest, followed by a racing, pounding heart beat.  This comes on only seconds after the head rush.  This of course is accompanied by a rise in blood pressure, usually with at least a 30 point increase in both systolic and diastolic pressures.  Note: this does not fit the usual criteria for anaphylaxis, where there is a drop in blood pressure.

Symptom 3 is facial flushing.  This comes on almost simultaneously with the increased heart rate.  I also have a large, blotchy red rash all over my torso.

Symptom 4 is muscle spasms.  My entire body gets the cramps, my back being particularly badly affected – it can be intensely painful.

Symptom 5 is a huge adrenalin rush.  I absolutely cannot sit still, and usually have to pace up and down, up and down, up and down, virtually wearing a hole in the carpet.  Depending on the severity of the reaction, this has been known to go on for several hours.  It is impossible to either sit or lie quietly in my bed, no matter how utterly exhausted or ill I might be.

Symptom 6 is oesophageal spasms, which lead to me retching and retching and retching.  Sometimes I feel intensely nauseous, other times not.  I don’t vomit, just retch to the point where I can hardly breathe.

Other symptoms include either sweating or shivering, facial pallor in addition to the flushing, needing to pass a bowel movement (though normal in consistency and not diarrhoea), needing to pee, muscle weakness and utterly overwhelming fatigue.

My reactions have never included itching (pruritus) or hives, and I’ve only had very occasional swelling (oedema) of my eyes and/or lips.  I do have itching and hives on a chronic level which I’ll talk about in another post, but never as part of an acute reaction.  I’ve never thankfully been rendered unconscious, though I have fainted.

As anaphylaxis is a graded response, not every reaction is severe.  Yesterday, I was at a friend’s house having a brew.  He’d bought some little mini chocolate fondant cakes to eat which I’d never had before, and within 5 minutes I got the head rush and some mild pins and needles.  My heart started to race and my face to flush, but I was able to control my breathing, the reaction didn’t escalate and after a short while the symptoms settled down.  I carried on the conversation with my friend like nothing was happening and he had no idea I was having an allergic reaction to the cake!


Without a doubt, the trigger most likely to bring on a severe anaphylactic reaction for me is medication.  Luckily I can avoid drugs most of the time but when I desperately need to take something, such as pain meds or antibiotics, I can sometimes tolerate a child’s dose, or liquids which I cope with much better than tablets or capsules.  Some drugs, though, are totally off the table, including sedatives, anti-emetics (ie drugs for nausea and vomiting), anti-depressants of any variety and general anaesthesia.

Alcohol is to be avoided at all costs and is the only thing which has ever caused me scary facial swelling.

Foods high in histamine, such as cheddar cheese, tinned tomatoes (which are high in GABA, see below!) and tinned or fresh (aka days old) fish, are also off the menu as they cause instant reactions.  I’ll talk about chronic reactions in my next post.

Other foods which have caused me problems seem to be fairly random, such as the iced fondants mentioned above, chamomile tea, the red jam found in cream cakes like doughnuts, paprika and cayenne pepper (but not curry or chilli powder), yoghurt (though I’m fine with other dairy, so it’s either the fermentation process or the live cultures), some chocolate (but not other chocolate).  Whenever I try something knew I never have any idea how it will go and eating out is still a game of Russian Roulette.

I’ve also had anaphylactic reactions to some supplements including magnesium (including epsom salts), GABA (found naturally in tomatoes to which I also react), sublingual B12, glutamine, melatonin, valarian, lemon balm and the herbal laxative Senacot, hypromellose eye drops, massage, osteopathy, chiropracty and acupuncture.

Menstrual hormones have always caused me problems and it was starting peri-menopause in my early 40s which sent my mast cells into melt down.  I am always more reactive in the week leading up to my period, and have more issues with reflux, itchy skin, insomnia, muscle cramps and migraines.  Roll on the menopause is all I can say, which seems to be taking for sodding ever!


When I was a very small child, I used to get “chapped lips” in winter.  Almost all my winter primary school photos show me with a huge red welt under my mouth which sometimes reached down to my chin.  Then, when I was around 14, my lips started to swell if I went outside when it was cold and wet.  I know that sounds completely bonkers, but the weather caused my first allergic reaction.  My lips swelled to such an extent that even my GP could see the oedema, but simply couldn’t get her head around the fact it was rain that set it off.  It lasted about 2 years then the swelling just stopped.  I do, though, still get tingly chapped lips when it rains.  As I type this we are having a storm outside and I have done nothing but cover my lips in Chapstick since the minute I got up!  I never mention this to anyone……can you imagine their reaction? 😉

I had my very first acute allergic reaction at the age of 16, following spinal surgery.  I suspect it was the general anaesthetic, but it could actually have been any of the other drugs used in the operation or one of the post op drugs given for pain relief.  It wasn’t a full on anaphylactic reaction and was confined to my muscles, which spasmed so badly for 3 days following the op I had to be given muscle relaxant injections.

The next reaction was an ocular-gyric crisis to the drug Stemetil, which I’d been given because of a severe vomiting bug when I was 17.  I was unwittingly given this drug again when I was 24 and had another severe reaction – it was this which led to me developing M.E.!

My next reaction at the age of 25 was to alcohol, which caused my whole face to swell and me to pass out.  I’d always flushed after drinking alcohol but the allergic reaction came out of the blue and I have no idea what set it off.  I haven’t been able to drink from that day to this – I’d kill for half a cider 😉

The next reaction was to melatonin aged 26, and is one of the scariest reactions I’ve ever had.

During the next 10 years I reacted to one thing after another, including various drugs like paracetomol that I’d used without problems since I was an infant, and innocuous things like chamomile tea and laxatives, plus any kind of bodily manipulation such as massage or osteopathy.

By the time I was 40, almost all drugs were out of the question.

At the age of 44 I started having anaphylaxis to food after having no food reactions before in my life.  At the time it seemed random and anything would set the reaction off, though of course I later discovered it was to foods high in histamine.


As my biggest trigger is drugs, on the whole it’s easy to avoid them.  Things, however, become more tricky when I absolutely need to take meds, such as having an infection requiring antibiotics or anaesthetic for dental or other procedures.  In these situations I avoid drugs I’ve reacted to in the past, and just keep my fingers crossed when trying anything new.

Going on a low histamine diet was an absolute game-changer for me.  It took several months for my food reactions to calm down, but now it’s rare I react to something and if I do it tends to be mild and manageable.

I am now very careful not to get bitten by insects, so use a non-chemical insect repellant spray during spring, summer and autumn whenever I’m outdoors, even in the garden.

I know stress and strong emotions (both positive and negative) cause my mast cells to have a hissy fit, so keeping my life calm, avoiding conflict, and having a strict routine where I eat well and get plenty of rest is massively important.


Due to past reactions with supplements I have never had the courage to try Quercetin, Vitamin C or any of the other things recommended for MCAD.  I do, however, take a Vitamin D supplement as I’m largely housebound and live in the north of England where sun isn’t exactly at a premium, and iron as my ferritin stores were low.  You’ll notice both are in liquid form – I avoid tablets and capsules like the plague.

There are 2 types of antihistamines used in HIT and MCAD:

  • H1 blockers like cetirizine (Zyrtec), diphenhydramine (Benedryl), Chlorphenamine (Piriton) and loratadine (Claritin) used to treat hayfever-type symptoms, or in the case of Benedryl more acute allergic reactions;
  • and H2 blockers like Ranitidine (Zantac), Cimetidine (Tagamet) & Famotidine (Pepcid) used to treat reflux, which occurs from an abundance of overly-zealous mast cells in the stomach.

I have had reactions to various H1 antihistamines so am very careful with them.  Luckily I have found one liquid brand of H1 antihistamine I can tolerate, but will only take it if I have really troublesome hayfever issues (usually in the spring).

I’ve also had problems with H2 antihistamines.  I frequently react to ranitidine, so am currently on famotidine.  I have reacted to famotidine in the past too, but after a break have started to tolerate it again – weird, but then that’s my life 😉

Many people with MCAD and/or HIT have a big problem with stomach acid/GERD and in addition to H2 antihistamines I also use Gaviscon liquid which creates a barrier to stop the acid from entering my oesophagus which, trust me when I say, is pure torture.

I have chronic hives and neither H1 nor H2 antihistamines have any effect on them whatsoever.  If they become really itchy and bothersome I have to resort to topical steroid cream, which is the only thing that will clear them up.

All the above keep my symptoms at a manageable level and I thankfully have never had to resort to more potent mast cell stabilizing drugs such as sodium cromoglycate, montelukast, ketotifen or similar.  I would be petrified to even try them, having had a reaction to both steroid tablets and inhalers, both of which are used to treat acute allergic reactions :-/


MCAD doesn’t conform to what most doctors are taught about allergic reactions.  We don’t even have ordinary anaphylaxis, which is driven by an IgE immune reaction, and little is currently understood about the mechanisms which lead to symptoms in mast cell activation disorder.

We are all, also, individual and your reactions and triggers will differ to mine, as will your response and reaction to treatments.

I think the best any of us can hope for is to identify, and avoid, triggers and to work out a treatment plan which keeps the illness manageable, which is no easy feat and can take a long time.  I feel lucky that my MCAD has been stable now for a good 5 years which isn’t to say I don’t have symptoms and no longer react to anything, but my reactions are milder and I’ve been able to identify and avoid the things which launch my mast cells into orbit.  Long may that continue!




Weekly roundup

I’m trying to be philosophical about the house move falling through, but in my heart I am devastated.  I know it’s lucky I found out about the roof and the sewage before I bought it, because if I’d found out after I have no clue how I would have funded the repairs, but it still feels cruel for the Universe to have finally shown me the perfect home only for it to be snatched away at the 11th hour.  There is one thing I know for sure: if just one more person says to me “it’ll be fine, the right house will come along you’ll see” I will break both their kneecaps.  I live in a rural area with a recognized housing shortage and that is the reality of the situation.  It’s like being single, and people telling me the right man will come along.  No, he won’t.  I’ve lived on my own for 23 years FFS.  There is no knight-in-shining armour and even if there were he isn’t going to want to take on someone who is forced to spend 18 hours of every day in bed and even when she’s not in bed is too tired to fucking do anything.

Now I am being forced to stay put, I absolutely have to tackle the issue with my neighbour’s customers blocking my drive.  I had already written to him a year ago, which had zero effect, so in November I instructed my solicitor to issue him with a pre-action protocol letter stating that if he persisted we would begin court proceedings without further notice.  He was given 28 days to reply to the letter………and we are still waiting.  He was also instructed to erect signs to direct his customers not to park on my land which he hasn’t done either, so it’s clear he has no intention of sorting the problem out.

Luckily, I have £50,000 of legal cover as part of my home insurance so this week I’ve opened a case with my insurers to proceed with court action for an injunction.  I’m now waiting to hear back as to whether they will take the case on, but I can’t see any reason why not – easements are covered under my policy, I’ve already done the required groundwork by writing to him and having my solicitor write to him, and I have 4 pages of CCTV photographic evidence from the past 2 months alone.  All of this because he didn’t give the need to park and offload heavy furniture a seconds thought when he took on the lease, even though it’s vital for his customers.  The premises simply aren’t suitable for a furniture business and that is the top and bottom of it.

We are having a once-in-seven-year storm here in the UK today and as I type this 70mph  winds and lashing rain are battering my windows.  I’m spending the day unpacking as I need my spare bedroom, which currently looks like a cardboard box warehouse, back.  I’m missing my photography, which is my stress release, and need to get back to some kind of normality and officially let go of the dream :-/




If it quacks like a duck..

As you know, my Dad has been having symptoms of an unspecified autoimmune disease for over 3 years now.  The facts are:

  • He has confirmed severe sensorimotor polyneuropathy
  • He has confirmed Mild Cognitive Impairment
  • He has confirmed inflammatory markers in his spinal fluid
  • He has a small IgA kappa paraprotein in his blood, which is rare as kappa paraproteins are usually IgG.
  • He is B12 deficient.
  • He has a dry mouth, nose and eyes which wax and wane in severity
  • He is constantly fatigued, ie he sleeps for 10 hours is only up for 3 then nods back off in the chair.  He also nods off every afternoon and sometimes again while watching telly in the evening.

There is clearly something amiss, but after travelling 3,000 miles, to 5 different hospitals and seeing nearly a dozen consultants we are no further forward in finding out the cause of his symptoms.  He doesn’t fit neatly into one illness profile and as each consultant only looks at their own speciality, ignoring anything else, no-one is piecing together the bits of the puzzle.

My best friend has also been struggling for over 2 years now to receive a diagnosis to explain what we suspect are auto-immune symptoms.  One consultant said she had Palindromic Rheumatism, but 2 others have said she doesn’t!   Her fingers have been swelling, turning weird colours, her skin is hard, shiny and flaky and she has pain and stiffness.  She:

  • already has an M.E. diagnosis
  • already has a POTS diagnosis
  • already has a Coeliac diagnosis
  • has seen a marked increase in period pain
  • has back pain which keeps her awake at night
  • is low in iron, despite taking the equivalent of a handful of nails every day as a supplement and being a meat eater
  • has had blood results which aren’t right, but aren’t quite wrong enough for an auto-immune disease
  • is under-weight despite eating relatively well
  • has been having infrequent bouts of severe stomach pain and vomiting

A uterine scan showed no problems such as fibroids or cysts.  A scan of her hands showed the joints were not inflamed and, as her Rheumatoid factor blood work is all negative, she was told she didn’t have Rheumatoid Arthritis which she flippin’ well knew already.   The scan did, however, show swelling in the soft tissues in her hands but the rheumy said that wasn’t his area of expertise – well who’s is it, then, exactly?  Your fingers don’t randomly swell up like a bloody sausage and turn bright purple for no reason.

Both my friend and my Dad are so fed up of the fight for diagnosis they’re giving up.  They can’t face yet another 6 month wait for an appointment to see a consultant who tells them everything they don’t have and not what they do.

Of course, this scenario won’t be news for many of you who, like me, struggled to get diagnosed with hEDS, MCAS or both.

Despite a lifetime history of classic hEDS symptoms, including:

  • joint hypermobility which was commented on by both doctors and physios
  • visible veins
  • blue sclera
  • soft, velvety, stretchy skin with tore easily
  • rare issues like congenital spinal stenosis and scoliosis (both linked to EDS)
  • gut issues since I was a very small child
  • dental overcrowing necessitating tooth extraction
  • easy bruising
  • cigarette paper surgical scar
  • GERD
  • hiatus hernia
  • gastritis
  • lifelong constipation
  • and the fact my Mum is hypermobile, has pectus carinatum (a common finding in all types of EDS & Marfans) and had a collapsed lung for no reason in her early forties (a complication of EDS)

    no-one even mentioned connective tissue.

I was told my chronic pain from childhood was because my parents had an unhappy marriage, I focused too much on my symptoms, was deconditioned as a result of having M.E. and/or was simply “overly sensitive to pain”!   It didn’t help that every x-ray, blood test and scan was ‘normal’, from which the doctors concluded there couldn’t be anything physically wrong with me.  Yet again no-one joined the dots.

Of course, getting Mast Cell Activation Disorder diagnosed was much, much harder!  All the symptoms were there:

  • flushing since birth
  • dermographism since birth
  • 2 years of lip swelling at puberty
  • chronic migraine, which began at puberty
  • pruritus (itching)
  • chronic hives which began at peri-menopause
  • hayfever which also began at peri-menopause
  • going from being allergic to 1 drug as a teenager, to just about all drugs by the time I hit peri-menopause
  • going from no food reactions to passing out every time I ate, at peri-menopause
  • awful gut spasms and pain
  • chronic, unremitting nausea
  • oesophageal spasms
  • difficulty swallowing
  • chronic sinusitis
  • tongue tingling and throat itching
  • chronic cough
  • over a dozen episodes of acute, grade III anaphylaxis
  • and of course a diagnosis of both hEDS and M.E. (common MCAS bedfellows) not to mention endometriosis (another common link)

Yet I was told for years that my allergic reactions were actually panic attacks (not sure how that causes hives, dermographism or your lips to swell?!) because it was physically impossible to react to all drugs or all foods – this little gem, despite no tryptase or histamine testing during a reaction.  My IgE (antibodies to an allergen) was normal y’see and that’s all the testing they needed.  Oh, apart from when they actually did proper skin prick testing and found I was actually allergic to birch pollen, apples and my dog – FFS!

It is absolutely necessary to have diagnostic criteria for diseases.  Having M.E. has taught me that, because I swear when a definitive test is actually developed around 1/3 of those currently diagnosed with ME will be found not to have it.  Having said all that, diseases have common histories and symptoms and in the absence of a firm diagnostic test if it looks like a duck and quacks like a duck, the chances are it’s not going to be a fucking elephant but a small, feathered bird that loves water!

Both my Dad and my friend have obviously got some kind of autoimmune problem.  They don’t fit neatly into a single disease profile but that isn’t a reason not to diagnose them with anything or not to try any form of treatment.  Similarly, if someone clearly has mast cell mediator release it’s important to recognize that, even if specific testing isn’t available, and to treat accordingly.  What’s not acceptable is to say you don’t perfectly fit the criteria for x, y or z so we are discharging you from our care, or even worse that your symptoms must therefore be all in your head.

Weekly roundup

Britain is out of the European Union.  I couldn’t give a flying fuck.  It’s been 3 years of hysteria and I’m so over it I can’t even tell you.  I thought the catastrophists would shut up now it’s happened and there’s no going back, but no.  The internet is full of folks hanging their heads and saying “we’re doomed.  Doooooomed”.  Oh shut the hell up.  168 countries around the world don’t belong to the EU and they manage to survive, including some European countries such as Norway which isn’t bankrupt, while Greece and Ireland who are members of the EU are.   In fact, Norway was voted the best country to live in on the planet by the United Nations 12 years in a row and I’ve decided I’m going to move there if the whining Remainers don’t zip it.  I genuinely think they want Britain to go down the toilet now just so they can say “told you we were right to want to stay in Europe” while they look down at both the feet they’ve just shot.

FB post issues

I have had the week from hell.  I had the survey results back on the bungalow which shows it needs a new roof and entire sewage system at a cost of £30,000.  I don’t have an extra £3000 let alone £30,000 so have had to request a price reduction from the seller.  The roof has come in at a staggering £17,000 which everyone is saying is outrageous.  However, my little cottage has a roof footprint of 550 square feet and when I had it re-roofed 11 years ago it cost £6000, so if I tell you the bungalow has a 5 times larger footprint at 2,500 square feet you can see why it’s so expensive :-/   It took me 7 months to secure this property and the sale is now precariously close to falling through.   I’m barely eating or sleeping and feel like I’ve been run over by a bus.

After my sarcastic letter to the rheumatologist about my Dad’s positive focal lymphocytic sialadenitis lip biopsy, he finally replied.  He tells us that although my Dad’s score =1 it needs to be >1 for Sjogren’s Syndrome.  I’ve now looked at every research paper I can find on the subject and no-one mentions a =1 score.  If you are <1 you don’t have SS, if you are >1 you do have SS –  no fucking mention of =1 *sigh*.  He also said that demylinating polyneuropathy isn’t a feature of SS, but my Dad doesn’t have demylinating polyneuropathy – he has sensorimotor polyneuropathy which is a feature of SS.   After 3 years of trying to get diagnosed with whatever is ailing him my Dad just wants to give up, and I can’t say I blame him.

My sister-in-law found out on Friday she is thankfully negative for the HER2 protein which accelerates the rate of tumour growth.   Her lumpectomy is booked for 13th Feb, but in the meantime she is having the Oncotype DX test as she is oestrogen receptor positive but HER2 negative.  The test predicts how likely the cancer is to return after surgery and determines whether she needs chemotherapy or not – results take 3 weeks to come back from America.  When I think about what she’s facing it puts everything to do with the house into perspective.  If the sale falls through it falls through.  I am already lucky enough to live in a beautiful home – it’s not like I’m dying or facing life on the streets.

I’ve been pretty miserable this week, but am the kind of person who can’t cope with misery for long.  Life is too feckin short and I even get on my own nerves when I’m moping about being negative.  I am already lucky enough to have everything I need and if I happen to get what I want it’s just the cherry on the cake.

bad day not life