Spontaneous bruising of eyelid.

[KatieA]

Hi all,

Last week I advised the community of 2 vision losses I'd suffered 3 weeks ago.

On Friday my left eyelid bruised (looked like I had a black eye). I think it happened when I bent over the bath to wash my hair. I felt as if I was going to have a nose bleed, which didn't materialise. I noticed the black eye later in the day. Has anyone experienced this?

I have positive B2GP1 antibodies, but not ACL or ANA, and am self administrating 75mg aspirin since the vision losses, as I am not on anticologulation drugs, or INR monitoring. I can't seem to get any Drs to take my condition seriously - they say i won't be put on anticologulation drugs until I have a "proven stroke". K.

[KatieA]

Thanks APs.

Yes I am in the UK, and I was under LBH (but not Prof.Hughes) until last year, but left to "try" the NHS as I hoped to get more support, by the way of Rhuemy Nurse, as my consultant (don't worry I won't name names) was too clinical (cold) and we didn't communicate well, and believe it or not he had used the same phrase re. "proven stroke" as my new NHS Dr........ having been round the block over several decades with chronic migraines, I believe that Drs purposely antigonize you if they want you off their books. I'm always polite, even under provocation, but my condition crosses over several specialisms and I am hypersensitive to medication, and this irritates them. I keep being told that I am too complicated or complex (which translates to me as too time-consuming). I tried to get a face to face appt with my GP on Friday, but was given a telephone appt. instead. Again I was told that I was too complicated for the GP practice and that she would write to my consultant to request a reassessment - not very helpful if I'm in the middle of an "event". I can't bring myself to go to A&E as on the only 2 occasions that I have, I got a hostile response. I know I should grow a thicker skin but I am too fatigued by the illness to fight the ignorance, and hostility throws me into depression which takes me weeks to pull myself out of. Where is the empathy? Where is the compassion?

Sorry for the rant, but it helps to "get it out" sometimes....... Tks, K

[Lure2]

Oh, how I feel for you!

If it helps you I want to tell you that you are not alone in this struggle even if I think yours is "special". You have really had yours. I recognize this from Sweden where the doctors do not know this illness. That is why we have to learn so much ourselves about this condition. I know I am unable to help you but you have my empathy.

I agree with that good advise form APsnotFab. She was really crossed! You should be anticoagulated!

Keep going and believe in yourself. Please let us hear from you again!

Kerstin in Stockholm

[Salty]

Katie, Can you go Back to LBH and see Dr Hughes or Dr Khamasthta? I, too, was told to wait until I had a stroke. Not!

[KatieA]

Thanks all,

Salty... I think i will have to, but I am too distressed at the moment to coherently speak to anyone. If I see a doctor at the moment I will be dx as depressed, which of course I am - any human woud be! I had to send my dog, who I adore, to live with my sister yesterday (hopefully temporarily) as I can't cope, and have spent today in bed trying to rest.

I intend to rest this week and regroup next week, and hope I don't have another eye incident in the meantime. K

[stillwaiting]

I have been told same at St T's. and by my local neurologist and hematologist. Thankfully, my rheumatologist wants me to take warfarin. I am positive for b2glp, LA and have had two late missed miscarriages at 17 weeks.

Lynn