My story : In 2014 my brother who was... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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My story

Molwal
Molwal

In 2014 my brother who was 26 had a huge clot in his leg in which they were sure they were going to amputate but instead was able to save it, he was put on warfarin but it turned out his body rejected it and it made no difference, he was on 17mg and his inr was at 1.6 so they gave up, less than a week later he had a quite a big stroke, he was then put on a different blood thinner. Fast forward to 2017 I was 16 and through my teen years at school I was Adament I’d got some sort of cancer or brain tumour, sounds weird I know but I didn’t feel right I knew there was something wrong with me I, there would be times my brain would just switch off and I’d have blank spaces and I couldn’t stop sleeping it wasn’t until I was 16 when I had the strangest feeling ever in my leg, it was as if there was a phone vibrating inside it, it took 3 trips to the hospital for them to believe me and accept it wasn’t a muscle injury when they tested for the pulse in my leg and there wasn’t one at all, I was then rushed to a different hospital to find out I only had one fully working artery in my leg and it had a clot in it. I spend the next 5 days in hospital while it dispersed and was sent home with blood thinning injections. I then visited the heamotoligist to be told I had antiphospholipid syndrome but a blood test in three months time would see if this was the case, I was put on warfarin and 3 months later I was told I had it, then fast forward to April 2018, id been on warfarin for 12 months but they couldn’t get it stable and my heamotoligist said he wanted my range between 3-4 to help my symptoms , I then had a stroke during my a levels with my inr at 2.1, since then my warfarin was been a lot more stable and I’ve been given permission to buy my own inr machine from Roche Which I now have. The big this is that me and my brother have gone through the exact same thing but according to the doctors it’s just a coincidence? Is this possible?, thank you for reading through if you got to this point :) ps sorry about any spelling and grammar

2 Replies
MaryF
MaryFAdministrator

HI and welcome and thank you for your detailed history. Are you in the UK? If you are we have a list of recommended specialists over on the right of the forum, under pinned posts, if not and also, we have a list here on our associated charity website: ghic.world/

This disease does seem to run in some families, it does in mine, most members including myself and my children plus my siblings. Also it is a good idea to check vitamin D, B12 and Iron levels and also to run a Thyroid panel. I can't state strongly enough how important it is to have a doctor who fully understands the condition and not just half of it. If in the UK, we are now holding regular events in London. Please use this forum as much as you like for your support and your brother is also welcome to join. We all learn so much off each other, and the information carried on the charity website above is good, not just for you but also for any medical staff involved in your care. MaryF

My brother and I only have the same mom but different dads and on my moms side my nan died of a huge stroke, my grandad had multiple strokes and my uncle had a blood clot too, but my brother doesn’t have Hughes syndrome and I see the heamotoligist within the next few weeks so I will bring up the lupus, i just don’t get how it can’t be connected like the doctors say

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