how do i get a referral if gp says inr testing is enough..i have hughes diagnosed after stroke, and dont have any follow ups..

[greenlady]

[jessielou]

Hi hon,

Is there another gp in your practice you could go to?

Maybe you could download some papers off the Hughes Foundation website at hughes-syndrome.org and see if current gp would refer based on further info.

I know there are others on here who have had strokes and may have more ideas for you.

In the meantime we will help if we can!

Hope you feeling ok today.

Take care gentle hugs love Sheena xxxx

[grovet29]

I had a stroke also and although I've had several other blood clots , I go to my gp and a hemotoligist on a weekly basis , my hemo does all my inr monitoring. I believe all people with Hughes should be under a hemotoligist care .

[greenlady]

thank you all for responses :-)..its only now i have joined the site, and i know i am lucky compared to lots. its just i'm beginning to feel a bit lost with it all-i was diagnosed with vertigo at hospital, but had mri, doppler etc a wek later. went back to work although not feeling good, and got a call saying my scan showed two strokes and lots of white areas..then diagnosed with hughes..its affected my memory/concentration, this year i just feel so tired, some days just feel as though someone has pulled my plug out lol.., and just back ache/joint pains although that may be age stuff...i dont know really. gp has been good, i dont see him much just get on with it..but apart from inr at surgery (veinous) no follow up for stroke or hughes..think for my peace of mind i'd like a check..gp is doing blood tests next week..happy new year all..may it be a kind one xx

[greenlady]

thank you x..strokes etc in april 2010, only went back to work a week-had to finish at that point as driving was an issue and job too much to cope with....difficult to tell which is what....so much confusion and no straight path to follow..i will write down and ask nurse to make sure and let you know... also will start taking vits and see what happen..

xx

[greenlady]

ah...good advice..so much to take in..as an aside, i got in touch with stroke support couple of weeks ago..and she has no-one known to her with hughes..its something she is quite concerned about and is looking into xx

[greenlady]

yes, good idea...mine contacteed kate hindle..i think she has mainly had older stroke patients with a lot of mobility issues, and not the younger. she is aware of hughes now, and i think will try to awareness raise..when i get a bit clearer i will help with that - the more the better