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Hughes Syndrome APS Forum

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Gadgets Story

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Hi

(Edited version)

My name is Garry I am 50 and live in Somerset South West UK.

Like Paddy I am one of a few men with APS, I do post on other APS forums. Apologies for my spelling, it always looks right when I type and wrong after re- reading! (APS / stroke) .

OK here I go.

I had migrain from about 14 to 25 then grew out of them. My first APS signs were in 1998 mid flight on the return flight from Chicago to Heathrow (I blacked out) it took a month to fully recover, I was young and very fit and i didnt go to the doctor, I presumed it was due to having a whisky on the plane and since I never had a drink 24 hrs before a fligh. I now hate / scared of flying but will do 2 to 2.5 hours fllght and thats my range! and only if I really have to fly.

In 2002 I had terrible pain in my lungs and was rushed to hospital where I was kept in and later that night I had a major reaction to amoxicllin, I had anaphylactic shock twice and was resusitated. (it was a close call, I had an outer body exepeirence) I recovered and got back to full strength after a month or so.

In 2007 I blacked out mid flight on my short flight from Exeter to Belfast Northern Ireland whilst on a work / business trip. I came around and thought "not again" the horrid sensation was identical to my 1998 episode. I was given oxygen by the firemen at the airport and rushed to Belfast City Hospital who checked me over, ECG etc, nothing wrong found. I returned home next day and straight to my GP who sent me to hopsital. APS was not picked up, I had a heavy "dead" left arm, speech and memory problems along with balance. I could hardly speak and I do recall saying I think I have had a stroke to the DR, no you have not, you do not black out when you have a stroke so that was dismissed! (Wrongly) This still upsets me as perhaps with early phsyio I might of got my arm back to full strength?

Over the next 9 months I was still off work, nothing had changed, life was hell. I then met a local haemotologist and he correctly suspected APS (altitude / cabin pressure triggered my sticky blood) He tested antibodies 6 weeks apart, confirmed APS and then referred mt to St Thomas Hospital. Thnak you Dr Bolam!

I met Prof Hunt at St Thomas and I was put on Warfarin and Plaquenil and returned to work in 2 months! Thanks Prof Hunt!

Upon returning to work after 11 months sick leave I took an opportunity of redundancy and in Nov 2008 I started my own business and created and run a UK Ltd company specilaising in high end mobility equipment wheelchairs, powerchairs (which I was working for when I had my stroke)

I work full time (and more) and in my case I am motivated by my work so it keeps me going and of course an income. I now employ my eldest daughter full time and have trained her on the business. I expect to take on another full time employee this year.

I hope this gives hope to others reading this, of course I am not cured, my left arm in particular is a problem now for the rest of my life (heavy and weak) but I have got back up and even started my own business. I work the hours I need to and if my fatigue is to much at least I can rest up, employers will not understand this!

I also have a hobby business with my wife as we own a pair of matching 1929 vintage cars that we use for weddings in our local area.

Good luck with your APS!

Regards

Garry

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