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Sticky Blood-Hughes Syndrome Support
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Headaches and APS

Hi friends! Hope all of you are coping and trying to b happy! I am even tho I'm waking up everyday with my migraines! I was without them for past ten years! Now I've had one headache for a month! It's 6 months and I'm not properly coagulated yet! How long shud I wait till they do something? When I was 24 had my first PE and at 29 had what they cald at the time a MIGRAINE STROKE! Shud I wait and get another Tia I did tell my doc this happened years ago! It's too long and too debilitating to have bad headache that always goes into a migraine! I'm SIK of it already! My calf in my right good leg is extremely painful again! Need to address that too! No one does anything, they wait till an event happens and it's too lat! Love y take 63 years to DX me and loose my precious left leg! When I lost my left leg, I never mourned for it like most! Instead my social worker told me to not be so tuf on myself and to give myself a break! I can't I must be tuf and strong! There are others worse of and need my help! But lately I'm saddened by the loss of my leg! Is that normal after a year and 3 months to get this! Is it like PTSD! I just want to volunteer and help our veterans thru it all! They list their limbs for horribly different reasons and I'd love to help them cope, but I hate my leg now cuz it's all bone and hurts to walk and I like to run!!! Lol... I'm getting a 3rd leg already which is unheard of in such a shot period of tie! They said its cuz I'm very active and lost a lot of weight! This too shall pass! Just don't want Anymore TOA's! One stroke and 2 Tia's enuf! My Neuro at the time said it showed on CAT SCAN! 

2 Replies

Please go back to your Consultant and or GP and take your most trusted articulate relative, friend or neighbour as advocate to help you push for the right result.  MaryF

1 like

Hi Debb,

Who is responsible for your treatment?  There must be some way to help you.



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