Let me start this post off by saying that I am beyond exhausted and have the brain function of a coma patient, so please excuse any gobbledegook and typos.
I’ve been quiet recently as I was resting up to travel 300 miles south to London to see Dr Seneviratne, Immunologist at St Mary’s Hospital. Although he works on the NHS he doesn’t have NHS funding to treat Mast Cell Activation Disorder (MCAD) so I had to pay to see him privately (in the Lindo Wing, where Prince George was born earlier this year!). Dr S was my last hope, after a northern mast cell ‘expert’ refused to even see me and said it was “highly unlikely I had any kind of mast cell disorder”, despite doing no tests or examination. If the appointment with Dr S went badly it was the end of the diagnostic line for me and I would be left ill and alone in the wilderness.
A 600 mile round trip to London is the furthest I’ve travelled in 18 years. On a ‘good’ day (and I use the term relatively) I can drive my automatic car 18 miles to the city and back. On a ‘bad’ day I can’t wash or get dressed. So to make this journey alone feels like I’ve climbed Everest and I dread to think how long it will take for me to recuperate. So, was it worth it? It was worth every exhausting, dizzy, painful second and every penny 🙂 .
I’d already sent Dr S a 3 page history, along with photos of my dermographia, insect bite reactions, flushing and hives, and my GP had written a referral letter along with copies of my test results from the Immunology appointment I had in Preston in June this year and the conclusions of Dr V-J (which were that I had autoimmune chronic urticaria, multiple chemical sensitivity and allergy to insect saliva). I wanted Dr S to have all the facts, as I knew I’d be very tired and brain fogged and forget my own name let alone a 46 year illness history. I was honest and told him the main reason for my appointment was that I wanted MCAD either ruled in or out.
Dr S was really nice to talk to and obviously very knowledgeable on MCAD. He explained in detail the way mast cells work, how they differ in allergy, Mastocytosis and MCAD, and then explained the link between MCAD, Ehlers-Danlos Syndrome (EDS) and POTS (Postural Orthostatic Tachycardia Syndrome) although he also went on to say that no-one knows why there is a link and we are only at the very beginning of research in this area. Dr S works closely in London with Professor Mathias, leading British expert on POTS and autonomic dysfunction in EDS and regularly meets with leading doctors in the mast cell, POTS and EDS field. He also explained the difference between MCAD and Histamine Intolerance and said that some people will have mast cell activation but normal DAO levels (ie MCAD), some people will have normal mast cells but low DAO (ie Histamine intolerance), some people will have neither and some people will have both.
He explained the testing procedure for MCAD (I’ll write a separate, detailed, post on this in the next few days), but also explained that MCAD can be cyclical and that if you test negative but continue to have symptoms suggestive of MCAD you should be re-tested at regular intervals.
After 30 minutes he asked if I had any questions, so I asked the following:
- We think I inherited EDS off my Mum, who also has many mast cell symptoms – is there a genetic/inherited factor to mast cell disease? His answer was that out of about 80 of his MCAD patients, 12 also have close family members (parent, sibling) with MCAD, so for some people there may possibly be an inherited component but no research has as yet been done in this area.
- My drug reactions seem to produce nervous system symptoms (pins & needles, muscle spasms, seizure-like activity) rather than immune system symptoms (swelling, hives, rash) – can he explain this? His answer was that it may be that drugs cause more problems for my autonomic nervous system than my actual immune system, and he’s going to ask my GP to formally refer me to Julia Newton’s POTS clinic in Newcastle for a more detailed look at what’s happening with my autonomic nervous system (I know for sure I have dysautonomia, but have never bothered getting a formal POTS diagnosis as all they do is offer drugs which I know for a fact I wouldn’t be able to take).
- Am I doing the right thing following a low histamine diet? His answer was that it’s obviously helping and he does put many of his patients on a low histamine diet, so in short yes (although the only diet he advocates is the Allergy UK low histamine diet, which differs slightly to the one I follow but does state that “treatment consists of avoiding histamine-rich foods but only to the level that is required by an individual. The amount of histamine rich foods tolerated will vary from person to person”, which fits in exactly with how I feel about the situation myself).
- My last question (asked with baited breath) was: based on my history and symptoms, do you think I have MCAD? His answer was: “almost certainly“. Yippppppeeeeeeee!!!!!!!!!!!!!!!!
We also discussed the problems I’ve had getting my drug reactions in particular recognised and taken seriously and he admitted that MCAD is such a rare and newly emerging disease that even if I’d seen him 5 years ago he would have diagnosed me with Mulitple chemical sensitivity, Idiopathic urticaria and allergies. He said knowledge on MCAD is slowly seeping through to the mainstream medical profession but it’s still very hit and miss as to whether you’ll find a doctor with sufficient knowledge to even be looking for MCAD let alone able to adequately diagnose it.
I left the appointment basically wanting to hug him for his understanding, and am now waiting to hear about some blood and urine tests I need to have done (he’s trying to find someone to do them in Manchester, but if not I may have to travel all the way back to London just to pee and have a needle stuck in my arm!), and once the results are through I need to go back to see him for a follow-up appointment. In the meantime he’s going to write to my GP and request she refer me to the POTS clinic for a formal assessment and do some routine blood tests on the NHS (not sure what blood tests I could possibly not have had done in June, but he obviously thinks they’ve missed something).
I’ll again cover his suggested treatments in a separate blog post another day, though they don’t come as any shock (antihistamines and mast cell stabilizers). I’m not allowed to commence these though until I’ve had all my tests, though he did say I can continue on the H2 blocker (Tagamet) for my GERD as without it I’m in reflux purgatory.
I can’t even begin to explain, after 15 years of horrendous symptoms and being either ignored or treated like I’m completely bonkers, how it feels to have someone tell you that you are actually ill, your symptoms are not only real but explainable (and in some cases treatable), and that you are believed. I feel almost giddy with relief. I’m not expecting a miracle in terms of treatment if I’m honest, as that is still drug orientated and we all know what my body thinks of medications, but for me that wasn’t really the point. The point was validation, which I might just be on my way to winning 🙂 .