Mast Cell Appointment no.2

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 🙂 .

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31 thoughts on “Mast Cell Appointment no.2

  1. Helen Humphries

    Your story sounds very similar to mine (even age!) and the activation through ANS, never had anaph but have lost consciousness. Not tolerating any meds means treatment is impossible though, even SC is proving impossible. Good Luck with it 🙂

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    1. bertieandme Post author

      Sorry you’re going through the same thing Helen, it’s such a nightmare when you can’t do the drug thing. I’m amazed I’m tolerating Tagamet ( H2 antihistamine) but only at half the recommended dose. I tried Zantac originally and it made me sick to my stomach and very brain fogged – still feel sickly on the Tagamet but no worsening brain fog and it helps the reflux (though I still need Gaviscon on top). We discussed SC and he said the trick is a very very slow, prolonged introduction at a tiny dose and work your way up – I’ll give it a go when my tests are out of the way and will just have to wait and see. I am going to try some more natural remedies too though, like Vit C and Quercetin (though I’ve reacted to B12 and other vitamins in the past so that’s just as tricky!). Jak x

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      1. chrissy

        I’m am on h1 and h2 blockers. I guess helping a little, but certainly not got it under control and it got really bad because of b12 injections at my doctors. God I wish I never had them done and just refused.

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  2. jane

    hi, jak – thank you so much for being so descriptive of all that you go through – it’s such a help for those of us going though similar things. i’m awaiting my appt (but not with a bigtime mcad specialist – just a plain old immunologist at this point). i remember long ago feeling better with vitamin c – build amounts up slowly or it might mess with you. also, i remember somewhere reading that taking b1 (thiamine) supplements can be bad for those with mast cell disorders – i don’t remember why. but after reading that i figured that may be why i can’t even take multivitamins (except for b12 and d3). i just wanted to say i’m happy for your good results on your visit to london. good luck!

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    1. bertieandme Post author

      Thanks for taking the time to comment Jane 🙂 . I’ve had weird reactions to B vitamins too, but mine was sublingual B12 (which, being vegetarian, I used to take daily but now can no longer tolerate). I also felt rubbish on magnesium, which everyone and his dog says is brilliant for Ehlers-Danlos! Hope your appointment goes well, but if not don’t give up hope – Dr S was my 4th Immunologist since 2010, the other 3 were a waste of time! Jak x

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  3. Stevie

    So very pleased to hear you have at last found a specialist who takes your symptoms a seriously as they deserve. No fun being a pioneer, is it?!

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    1. bertieandme Post author

      Thanks Stevie. You’re right, it’s a hard and lonely path with both the Ehlers-Danlos and the MCAD. I think we’re going to be hearing a LOT about mast cell diseases in the next 10 years though. Jak x

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      1. Marjorie Lovett

        does this cause recurring infections in the body ty i have same symptoms but dr. think i am crazy in the head but yet been hospitalized 9 times in past year and half with infections but infections are not in the blood, they cant find anything wrong on ct scan either, i did have endoscopy done and have a gastric ulcer, have pain in should blade area for year and half now and some problems with chest area also. a lot of heart burn have several herniated disks 3 in neck and bra line area and middle and lower back. and info please pm me on facebook ty marjore lovett

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        1. Jak Post author

          Hi Marjorie

          So sorry to hear you’re having problems. I’m not a doctor and can’t diagnose anyone with anything, all I can do is share my story. That’s not much help to you I know.

          Recurrent infections not routinely picked up on blood tests can be a symptom of many diseases, eg Lyme. Some people with MCAD do get recurrent infections but they’re usually specific, eg constant urine infections or constant inner ear infections. I personally don’t get any infections with any of my diseases. There’s a forum which discusses mast cell issues here http://www.inspire.com/groups/rare-disease-and-genetic-conditions which I’d recommend you join. Type “mast cell” in the search box and you’ll see lots of posts on the subject or you could ask a question of your own.

          Not sure if you’re asking whether your pain could be Ehlers-Danlos? Again, I can’t diagnose anything but if you’re worried I’d recommend seeing a rheumatologist (if in the UK) or geneticist (if in the USA). Again, Inspire have an excellent forum on EDS which you might like to read through if you need to find out more http://www.inspire.com/groups/ehlers-danlos-national-foundation.

          Good luck. Getting the right diagnosis can be incredibly difficult so I do feel for you.
          Jak x

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  4. Sherry

    Thank you for this post. It is the first post I’ve read that really felt like the makings of my own story…except that I am in wait mode…waiting for my upcoming special appointment re: Mast Cell Disorder. First doc for me on this subject paralleled yours. So thanks for the indirect validation…just by sharing your own story.

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    1. bertieandme Post author

      Thanks for taking the time to comment Sherry. I’ve felt so alone in my struggle for years and am amazed through my blog how many other people are having the same battle. Hang in there – it’s taken me 15 years to find a doctor who didn’t look at me like I was completely nuts!! Good luck with your appointment. Jak x

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  5. Jodi owen

    Congratulations on a successful consultation!! My GP referred me to see Dr. Seneviratne at the Royal Free but I learned last week that, as you mentioned, he only sees MCAD patients privately. Guess I’ll have to go that route now. Would you mind telling me what you paid to see him, how long you had to wait for an appointment and if your tests (aside from N-Methylhistamine at Doc’s lab) can be done through the NHS?

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  6. bertieandme Post author

    Hi Jodi

    I think it took about 2 weeks for me to see him – he does a Saturday private Clinic in Oxford and an evening private clinic in London at St Mary’s most nights 5-6.30pm (the poor chap must be exhausted!). First appointment, which lasts 45 mins, costs £310. Follow-up apt, which lasts 30 mins, costs £270. None of the 4 histamine tests or the DAO test I’m having can be done on the NHS. They are costing £320. However, if he requests skin prick testing, total IgE, tryptase (which he’ll most certainly ask for if it’s not already been done), routine blood work etc. these can all be done on the NHS (I’d already had mine on the NHS before I saw him). Seeing any consultant privately is a seriously expensive business :-/

    Jak x

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  7. Jodi owen

    Thanks, Jak! I greatly appreciate all the details! At this point, it will be worth the cost!
    I’ll let you know how it goes.
    Jo x

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      1. Nick

        Actually, I sent an email a week ago and heard nothing back yet. I’m just wondering how you long you waited or which email address you used?

        But I’ll definitely be happy to talk with you now and in the future. I’ll email you.

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          1. bertieandme Post author

            Hi Nick

            WordPress doesn’t assign email addresses as far as I know, so not sure which address you used to email me? I haven’t received anything. I’m so sorry but I’m simply too unwell to email everyone privately – with over 200 visitors to the site every day it would just be impossible for me, I hope you understand.

            Best wishes
            Jak x

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  8. Baz

    Hi Jak
    What a long journey, and one you have been so generous in sharing. Sadly my wife has a similar history and may soon be travelling to be seen by Dr S, one thing that did surprise us was Dr S requested payment up front, was this the same for you?
    As we have received many private appts over the years we have never had such a request (although many with medical insurance do this), we are a bit concerned and wondered if you had to do the same?, we are also wondering if perhaps this is a new policy, we really can’t fathom it out.
    We hope that your recent Appt with Prof N helps you too, what a lot of mileage it takes to cover this dreaded condition
    Good health
    Baz

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    1. bertieandme Post author

      Thanks for taking the time to comment Baz, though so sorry to hear your wife is on a similar journey. No, I didn’t have to pay up-front to see Dr S – I paid on the day. I suppose it’s to stop people cancelling appointments as he’s so busy, but if that’s the case they should take a deposit. In my eyes it’s totally wrong to ask people to pay for something they haven’t received yet 😦 I hope he can help, just don’t expect miracles – there just aren’t any when it comes to mast cell disease. Jak x

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  9. Zebby

    This website, all of this information, is fantastic! It has really filled in some monumental gaps for me. I have EDS and POTS, some other illnesses besides, and highly suspect I have MCAD. Cant make it to London. Trying to locate a specialist closer to home. This northern mast cell ‘expert’ that was so ignorant, I understand how you do not wish to name and shame, but could you give a hint? What specialism, Immunologist, allergist? Its so hard trying to find someone outside of London and would be a head start knowing who to avoid. Would really appreciate any kind of tip 😉 Best wishes & improved health X

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  10. Eleanor

    Thanks for writing this. I found your other post earlier and am glad you got to see someone who knows their stuff. I started out googling ‘anaesthetic drug reactions’ (having had severe problems and might need surgery) and came across an Anaesthetist’s paper that mentioned Masocytosis – which I have not heard of before but gave me a glimmer of something. I have been seriously ill twice after having local anaesthetic at the dentists. The last time I was hospitalised with symptoms like a stroke and severe headaches and chest pains – I haven’t been right since but had already had allergy tests at Guy’s hospital who ruled out allergy to all local anaesthetics and I always have the ones without adrenaline. (I am an asthmatic and have various well-managed allergies). My local Immunology doctor was scathing and made out I was some hysterical person and nothing wrong with me. Basically – if it’s not allergy – its’ ‘nothing’. As my main symptoms were in the head initially – confusion, speech loss, sever head pain, I asked to see a Neurologist. He diagnosed Basilar migraine and suggested taking medication before I have local anaesthetic again. I am chronically unwell with recurring dental infections which lower my immune system so I go down with flu regularly. I decided against ‘trying again with medication’ as I feel some damage occurred after the last time – it was 9 months before I was up and about again and have not been quite right since. So I was googling to find out about anaesthesia in the hope there was a safe way of having all my teeth taken out (urgh!!) under general anaesthetic and be done with the infections and regularly needing local anaesthetic. And came across Mastocytosis. This makes sense – I keep saying it was like I couldn’t detoxify drugs and had system reactions. My GP also seems to think I’m just weird and neurotic – clearly he thinks I like to make myself ill or am imagining it! I have had unusual reactions to drugs for many years, but mostly in the last 15 years. I also have had fibromyalgia for many years and thought it might be something to do with that but the neurologist said no. I am also a former nurse so tend to do a logical ‘process of elimination’ – if the drug in my arm is ok, but in my head area is so drastic, then it is either a) the injection site b) the dosage level or c) a reaction to surgery. But what IS it?!! So maybe I should go and see your London Immunologist, but it does sound very expensive! If it is Mastocystosis it would be good to have a diagnosis even if there is no cure – and it could certainly help with decisons over future anaesthetics as some are better than others for this condition apparently. In the past I have had all sorts of weird drug reactions – mainly extreme drowsiness, mild anaphylaxis type symptoms, swelling up – the red colour in some pills does it, the additives in some paracetamol do it (the more expensive versions are ok).

    Can I just ask please? Have you had your tests done and what were they? Blood tests? Best wishes.

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    1. bertieandme Post author

      Hi Eleanor

      Really sorry to hear everything you’ve been through. I think most mast cell people have struggled for years with doctors telling them they were hypochondriacs, or had some kind of behavioural or mental health issue sadly.

      If you think you have Mastocytosis it’s really easy to test for – even your GP could do it though I think it has to be kept on ice. You need to take a blood sample for Tryptase – anything greater than 20 strongly indicates Mastocytosis. You’d then need to be referred to a consultant for further testing.

      My Tryptase was only 4, which isn’t unusual in Mast Cell Activation Disorder when tryptase is always within the normal limits (which separates it from Mastocytosis). It was then I saw Dr S in London. I was then tested for histamine and DAO both via blood and urine. You can also have Leukotrienes tested for by him these days, though they need to be sent to America and it’s expensive.

      Hope that helps.
      Jak

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  11. Andrew Hurst

    Hi Jak, thank you for posting your thought and experiences, I am hoping it will help a friend of mine who has similar problems. I have been reading Brain Maker by Dr David Perlmutter, this book has opened a lot of doors for me and describes lots of new emerging science that may help you and fellow sufferers. All the best of luck to you all.

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  12. emanueletaichi

    Hi there
    I’d like to go see Dr Seneviratne privately but can’t find out any contact details for his private practice on the internet, only that he works for the NHS at the Royal Free. Can you please post the best way to contact him?
    Thanks

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      1. emanueletaichi

        Thanks – that’s good to know! I’d come across that page and left a message and as I never heard back thought maybe it was out of date. Will keep trying.

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