Sticky Blood-Hughes Syndrome Support
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was feeling a little low

Hello everyone

I was feeling a little low, forgot how to pull my trousers up, forgot how to walk with 2 legs (you tend to hit walls alot), worst of all I forgot how to knit! All the usual dodgy vision, aural hallucination (make my normal tinitus so much more pleasant as I hear classical music and brass bands), migraine, absences, slurred speach added to this I had tics and finally was unable to work. Trotted off to my doctor who is lovely but, in his own words, totally out of his comfort zone with my conditions. My previous GP of 23 years and I had a fantastic relationship and we worked through everything together within the constraints of the health service. I am still training my new GP. He sent me for bloods and my INR was 0.9. He was happy that this was normal! Yes it's normal if I'm normal, I told him, but I'm not normal. I taken antiplatelets, I'm soon to see St Thomas' and I have just had an abnormal MRI showing brain damage and my other blood clotting test are flagged as abnormal. I am also on 600mg of plaquenil daily...I am not normal!!!! So I gently encouraged him to give me clexane until I am seen at St Thomas'. I felt like a bit of a bully but at the end of the day, I want to be well enough to get to that appointment next week. I will let you know how I get on

Love to you all

Sharon xx

9 Replies

:( Sharon,

I'm so sorry you feel so bad at the moment.

Hopefully you will start to pick up soon & good luck with the appointment next week.

I tried to do Zumba was hopeless & I went away feeling worse about myself for trying :( I just cant seem to co-ordinate / keep focus on anything! my left eye feels weak recently too....which annoys me as I need good vision to do my photography.

Anyway....hope you get ok soon hun,

xx Sue xx



So sorry you are having a bad time - it's really horrid. The good thing is that it looks as though your new GP is trainable!! Don't feel bad, you know how to get the best out of your body so push until you get it.

I hope someone can help you soon.



I am sorry you feeling this way at the moment but do not feel horrible about bullying your GP some times that is what is needed to get things to move forward.

Keep your hopes up and if you want to vent we are always here.



Hi sharon,

Many of the symptoms you describe are similar to my own. I think many others can identify with them as well.

Thank goodness you will be going to St. T's. It is good that your GP is at least listening. Lets hope the Clexane helps.

I take daily Clexane and it does help. It also works pretty quickly, unlike warfarin, so hopefully it will give you the boost you need to make it to your appointment.

Let us know how you get on

Sue x


Hello Sharon

You are a total trouper! MF x


Hi Sharon

so sorry you so poorly at the moment.

I hope everything stabilizes so you make that appointment. Like you said its much needed.

Sending you big hugs.

Keep fighting hon.

Take care gentle hugs sheena xxxx jessielou xxxxxx :-) :-) :-)


Thank you all so much for your support, off to St Thomas tomorrow - little bit nervous. Preparing a note of everything that's happened since I was last there - always sounds like a real list of the "symptom Olympics" ha,ha! But I guess they are used to it.

Am amazed at how much better I already feel (not right but sooo much better) after a few days of Clexane. Is it my imagination or can I actually feel blood moving in my left leg? Having a very very restful day today as I know tomorrow will be a challenge.

Thank you again for your support - I feel very blessed to be a part of this group

Love Sharon xx


Good on you Sharon, best wishes MF


Hi Sharon

how you get on at tommies??

Hope you ok today!!

Take care gentle hugs xxx sheena xxxxxx :-) :-) :-)


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