Sticky Blood-Hughes Syndrome Support

Eye movement problem


Just wondering if anyone else has problems moving their eyes from left to right as this causes blurred vision and pain? Also choking and reduced movement in limbs on one side and slurred speech?

Have been admitted for it but last time was told it was migraine and discharged and it left me with permanent reduced movement in toes and left hand slightly droopy mouth to left.

This time I want to be more prepared to stick up for me. I was wondering if hughes or maybe the fact I'm vitamin d deficient could be cause

Thanks so much

Love ally xxx

5 Replies

Hi Ally, What is your inr?

Are you on warfarin?

I have a strange choking thing happen some times when I'm asleep, they still havn't answered that one for me!

I was wondering what your inr is as maybe if its below 3.0 it could help you if they made it higher? a few of us have trouble getting that ok by the docs as its a worry in case we get 'a bleed' with the blood being thinner, but some of us feel a lot better for the higher in....... just an idea to enquire about?

Is your doc' good with Hughes or do you see a specialist for Hughes?

The symptoms you say you are having really should still be looked at further.

Hope you are ok,

Sue x


Hiya suzy

My inr is 3.5 to 4.5 but it doesn't make a difference with my eyes so they are checking for ms again.

Have you seen the speech therapist for the swallowing? Mine said my throat isn't shutting properly when I swallow

Lovely to see you honey pie

Love ally and woof from murphy xxxxx


Salem says meow to you :) :)

At the moment I've been seen by the neoroligist & 'shrink!' so far....back in London June as my doc' doesn't know what it is so have to wait till then!!

Your higher inr should help you with those sorts of symtoms then Hughes related, but still ask to be seen by doc'/specialist if I was you Sue xx


Hi Allyson

as sue says you need checking further, the symptoms you list are very like all the neuro symptoms lots of us get. I too have trouble with my eyes, vision blurring, pain etc. Going to get eyes checked again just to be safe.

Vit d deficiency seems quite common amongst us hughies, but is quite prevalent in the UK. I take Vit d with calcium that st t's prescribed, Really not noticed any improvement in neuro symptoms, still talk gibberish at times, have numbness n pins n needles in arms, legs, hands and feet, plus memory issues. So assume its more likely the sludge blood not carrying enough oxygen to the brain.

Hope you are well. Ask away n we will help if we can.

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)


Thanks so much. I have been in hospital overnight this week for it but the neuro said I need psychotherapy mmm possibly , but not for my eyes hahaha

Thanks loads really, I am sorry but feel reassured it's part of our mud blood xxxxzz

Love ally xxxx


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