What?

Hi my name is Lee, I was diagnosed with APS 2 years ago after having a stroke when I was 35. Since then it's been a total rollacoster, I have been admitted to hospital around 13 times with hemaplegic migraines and loss of right hand side. I now have a neurologist and take gabapentin for the migraines and clopidigrel for my blood. Just got to see if that's going to work. The worst thing is even though I have been diagnosed 2 years ago not one single doctor at my surgery has even bothered to learn what APS is or even called me in to talk about it at all, every time I go to the doctors they just shrug their shoulders and say I don't know what it is. The first time I got took to hospital the consultant said you can't have APS as only women get it. To the point where my works have sent me to have a consultation with their doctors and even he said I don't know what it is, but he did say that the type and severity of the migraines would put me under the disability equality act. Isn't APS also classed as a disability?

Lee Brown

Sunderland

11 Replies

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  • Hi there and welcome, firstly many on here live a full life and this can be achieved with the right medication and medical staff in the picture, please firstly familiarize yourself with the charity website and also get your GP to refer you to a specialist. It sounds like you have been referred to people who only have half the knowledge, you need a specialist who understands the disease in it's entirety. There are plenty of men on this site with Hughes Syndrome/APS.

    hughes-syndrome.org/

    hughes-syndrome.org/self-he...

    What you could do, is ring the secretary s of all the current specialists/also GP, and get their email addresses and send them an email marked for the various doctors attention, the charity website and list of specialists. You GP will welcome the input of a specialist that help you get your condition to a more manageable place.

    MaryF

  • Thanks Mary

  • Hi Lee - email me at the Hughes Syndrome Foundation and let me have your address so I can send you some leaflets to help educate your care team - it must be so frustrating for you! Email is: kate.hindle@hughes-syndrome.org

    I too have been hospitalised for days with a hemiplegic migraine. Fortunately, I was at a hospital in Winchester where the Stroke Unit was very enlightened about APS (although they point blank refused to call it Hughes syndrome!), although there was one old-fashioned doctor in the neurology department who tried to diagnose a TIA and treat me wrongly with warfarin.

    I'm afraid it really is rather pot-luck at the moment, but the HSF is trying to get the message across in any way we can. In the meantime, the best thing we can do as patients is educate the healthcare team we come into direct contact with. I always bore any unsuspecting person about APS from opticians, to phlebotomists (and no, surprisingly, a lot haven't heard of it), to GPs and nurses - they must run when they see me coming!

  • When I had my stroke, they were convinced for about 5 days that it was a hemiplegic migraine, I kept telling them that the symptoms i.e. loss of sensation, fine movement etc. on left side were not improving (started off with full paralysis of left arm and left side of face but quickly within 1.5 hrs. recovered to above level). It was only when they did the second CT (as I could not tolerate MRI) that they conceded that I had actually had a stroke, I therefore am not sure I would exactly ever trust them if they told me I was having a hemiplegic migraine again - if I was in Lmb28's shoes I would want Warfarin, and people around me who really understood the condition! I do have Topiramate to stop migraines, from this thread it sounds like hemiplegic migraines can also be due to APS?

  • Hi Elaine - I've had both a TIA (years ago when I was untreated) and the HMs recently. There is a big difference in the onset of symptoms - although the symptoms themselves are identical and difficult to distinguish between. A TIA or stroke will come on very suddenly, while the HM is of a more gradual process.

    I personally wouldn't want to take warfarin unless I had had a major thrombosis, so was glad that there was a very switched on doctor at the stroke unit.

    Yes, it does appear that many people with APS do have HMs - more research needed as usual ...

  • That is an interesting distinction - it should have told them straight away that mine was a stroke as it came out of the blue with immediate paralysis, but no - they kept insisting it was a migraine until the scan told them differently!

  • The Professor is also keen to educate and often speaks to me at appointments about inviting GPs to his training and awareness sessions. He would be sad to learn of your struggle to raise awareness with your support team.

  • Hi Lee very frustrating for you, so many have gone down similar paths & it shouldn't be that way now....I had to push to be listened to seriously, but at least it didn't take me too long, had to change gp too.....maybe consider that? You need to get a good specialist behind you or try to get to see one at St Thomas if possible.....that way your gp also has someone who knows about Hughes to ask for advice when needed, that's what mine does & listens to my opinion now too!! Good luck....

  • Hi everyone, as you can see from my post above I have had a issue with doctors and been in hospital numerous times since they took me off warfarin. 8 weeks ago they admitted me with a fever and issues with my kidney. I had a chest ct which was clear. Now I am in hospital again after chest pain to find I have a bloods clot in my lungs and signs that I have had others over the last 8 weeks even after 2 doctors appointments complaining of heavy legs and breathlessness. My inr has come back at 0.9 and now have been put back on warfarin. So am a little fed up and now have to have a heart scan as the ct showed a strain on my heart. Any ideas?

  • Hi everyone, as you can see from my post above I have had a issue with doctors and been in hospital numerous times since they took me off warfarin. 8 weeks ago they admitted me with a fever and issues with my kidney. I had a chest ct which was clear. Now I am in hospital again after chest pain to find I have a bloods clot in my lungs and signs that I have had others over the last 8 weeks even after 2 doctors appointments complaining of heavy legs and breathlessness. My inr has come back at 0.9 and now have been put back on warfarin. So am a little fed up and now have to have a heart scan as the ct showed a strain on my heart. Any ideas?

  • Hi, I can not understand this. You have got good suggestions from the best people there are on this site.

    Do you have a diagnose of APS? Have you succeeded in getting an APS-specialist suggested above?

    You must have an APS-specialist and a diagnose; these are the two most important things with this illness.

    If you are going to be on warfarin your INR must be in range. There are also very good books available on Hughes Syndrome Foundation Charity website. I prefer "Sticky Blood Explained" by Kay Thackray. She has had heart problems also and has APS. I have also heart and lung problems. I hope you will take real good care of yourself.

    Tell us please how it goes for you.

    Kerstin in Stockholm

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