Today was the day. I had the private consultation with one of the UK's top migraine specialists.

I'd sent the poor man a ten page chronology, diary, symptoms and even pretty picture of brains!

When we got there, I found that he'd actually read all the 'dirty dossier', as I call it. He'd made extensive annotations in preparation for the questions he wanted to ask, and he'd already called colleagues to discuss the case.

We had about an hour together. He asked very smart questions and explained all the science and technical bits without at any stage talking down to me or suggesting that I haven't experienced what I have experienced. I'm glad that I've read up on things here and also read some of the academic papers because at no time did I feel out of my depth.

At the end of the consultation, he dictated letters to my new GP and to other colleagues and researchers. In these he gave his opinion that three years ago I'd experienced an ischaemic attack and NOT a hemiplegic migraine (as diagnosed by the ER/A&E people at the time) - she wrote that 'this lady has had a horrendous time' and talked about my brain having sustained 'several hand grenades'!

In other words, I had a stroke and they didn't diagnose it as such but as a hemiplegic migraine. Thus I was left to fend for myself with a plethora of vile disabilities - and added insult to injury for three years by ignoring me or offering cognitive behavioural therapy and very inappropriate medications to try and convince me that I was wrong.

He also diagnosed, as we thought, lifelong hemiplegic migraine on top and gave my new GP a whole host of preventative treatment suggestions to try and is arranging, as a matter of urgency, a PFO scan at a hospital in London (he thinks I have a 50% chance of having this condition) and FHM dna tests with the University of Leyden researchers for me and all my family members who have this form of migraine.

He also suggested an initial regime of magnesium and vitamin B2 supplements to start immediately. I'll post details of all the other meds when I get a copy of his letter and as I try them.

Obviously, there's a lot more than this. But these are the 'highlights' as it were.

I write this, though, as a major cautionary tale....for 3 years I've been messed around, ignored, patronised, given extremely poor, inappropriate or no treatment/support. It has all had devastating repercussions on every area of my life. There are so many awful outcomes as a result that I cannot even begin to enumerate them here.

Right now, I can say however that I am feeling very confident in this doctor, totally vindicated and also very very vexed. The NHS (UK National Health Service) has completely messed up my life. 


For now I need to follow this good doctor's suggestions for treatment and tests and get the recurrent HM under control.

THEN, we'll look at the wider ramifications of his diagnosis....

I'm sure Teri will be able to add this doctor to the 'recommended by patients' list that she's compiled, and I'll be letting her know as much detail as necessary for him to be get this 'seal of approval'!