Today was D Day and my appointment in London with Dr Seneviratne regarding my diagnosis. As I type I am on a rickety tilting train (which is making me feel really motion sick) travelling the 300 miles home north only 7 hours after I began the journey south. I am beyond tired, my brain is mush, my back is killing me and I have painful reflux but I also now have a diagnosis (fanfare please!):
I HAVE “PROBABLE” MAST CELL ACTIVATION DISORDER
COMPOUNDED BY HISTAMINE INTOLERANCE
Yes my friends I have the double whammy!
My DAO came back low at 7 (anything below 10 indicates histamine intolerance, with most people’s being at least 20).
My N-methylhistamine came back normal, but at the high end of normal at 140 (range is 34-177). However, this has to be balanced with the fact I had been on a low histamine diet, and actively restricting histamine intake, for 8 months before I had the tests done in addition to taking anti-histamines. Bearing this in mind I really shouldn’t have had a histamine level that high, and both Dr S and I are convinced that if I hadn’t been on the low histamine diet my N-methylhistamine would have been through the roof. In a way it’s a shame I didn’t have the tests done this time last year, when my reactions were terrible and I hadn’t started the diet or any drugs. However, the fact that it’s still high even with the diet and drugs proves to me that last year it would have been off the Richter Scale.
The diagnosis of Histamine Intolerance is absolute.
The diagnosis of MCAD is “probable” simply because the histamine tests were within the normal range, but like I said he is taking my diet into account and still giving a “probable” MCAD diagnosis based on history and symptoms. We both agreed it is incredibly frustrating not to have access to PD2, heparin and the other tests available in the States which would have proved beyond doubt that I had MCAD. I know Dr S is trying hard to get these tests made available through The Doctor’s Lab and for them to be available in the north of England (The Doctor’s Lab has a branch in Manchester) not just London. It would be a huge stride forward in mast cell disease diagnosis in the UK. I could stop the anti-histamines and the diet, wait 6 months and then have the tests repeated but I’m not desperate enough for an “absolute” MCAD diagnosis to want to start passing out again every time I eat – a “probable” is good enough for me.
It’s been a lonnnnng road. I’ve had symptoms like flushing and dermographism since early childhood, raging drug reactions for 15 years, GERD for 10 years, and ‘allergy’ type symptoms and food reactions for 2 years. I have been told my drug reactions were “behavioural”, or a “panic attack” or I was looked at like I was totally nuts. I feel so grateful to finally have vindication that, no, I was in fact having an anaphylactic reaction and my body was being flooded with potentially life-threatening histamine.
My S wants to try me on Sodium Chromoglycate (a mast cell stabilizer) and see how it goes (if I can tolerate it, and it’s a big if). Despite my DAO being very low he doesn’t advise taking DAO supplements as he doesn’t know enough about them to know if they’re either effective or safe in the long-term. I’ve got to say I agree with him. Just because something is a “supplement” rather than an actual drug it’s often thought that it must be safe and innocuous. Trust me, it’s not. I’ve had two of the worst mast cell reactions of my life to supplements I bought from a health shop, one of which was Melatonin to supposedly help me sleep.
The other thing that came out of the consultation today is that Dr S wants me to be referred to the Syncope Clinic at Newcastle run by Julia Newton. Thankfully this is an NHS Clinic and considered one of the best in the country to diagnose and treat Dysautonomia. I’ve had Dysautonomia for 20 years but have never had it formally evaluated simply because I know they’re going to offer me drugs I won’t be able to tolerate and, pre-mast cell diagnosis, when I refused drugs I was often told by medical professionals that I was wasting their time and obviously didn’t want to get well! Now I’m hoping medical staff will take my drug issues a bit more seriously even if my weird reactions don’t appear in some dusty old medical textbook (I may subtlely remind them that if they are aware I have drug allergies, don’t take them into account and I have anaphylaxis, I could sue).
It’s now past midnight, I’ve just arrived home and I’m really ready for some sleep. I go back to see Dr S in 4 months for a follow-up. Please ignore any typos, as my last remaining brain cell gave up the ghost somewhere around Preston 😉