Sticky Blood-Hughes Syndrome Support
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Finding a purpose while waiting in A&E

Thought I'd quickly correct the legion typos in my reply to Rach and post as a separate post.

I went to A&E a few weeks back. I was finding it hard to walk and my head felt like it was about to explode. The doctor did a few tests and said yes you have something going on, with high inflamatory markers etc. But he said that he couldnt say what and I would have to go back to my GP for a referal to a rhuematologist. So much for my attempt to fast track things.

While waiting in A&E for tests to come back, a guy covered in blood came and sat next to me. This wasnt something I was hoping for as I have a bit of OCD around blood. But walking away would have seemed rude. Sometimes social norms can be more powerful than primitive fears I guess. Anyways, I got talking to him and it turned out that he was covered in blood because he had decided that it would be a good idea to take the canula out and was amazed to see the fountain of blood that ensued. I went and got him a cup of tea (in part an excuse to escape while the blood on him had a chance to stop dripping) and came back and chatted some more. With three kind old ladies looking on with sympathetic smiles and at least one of their husbands having fallen asleep, the guy told me his story. He had been suicidal all his life, had had encephalitous as a kid, his mum had died of MND, and he was an alcoholic. But, he said, the alcohol had saved his life. He had set out to finish himself off last year and was so drunk that he tripped on brambles while taking a short cut through the grave yard and was knocked unconscious. I guess he ended up in the grave yard but not in the way he expected.

Im not really sure why Im telling you all this. I guess I just got writing and havent stopped yet. Funny thing is that I came away from A&E none the wiser about what was happening to my body (in addition to the two autoimmune conditions I'm already diagniosed with). But speaking to this guy was like a kind of epiphany. Ive been very depressed myself since my health began collapsing last year and feeling kind of without a purpose. What do u do if you are an academic researcher by trade and now have severe brain fog, not to mention disppearing eyesight? But I felt that I might have helped teh guy I spoke to. He seemed to have been smiling at the end and seemed a bit more positive. Maybe my purpose might now be to use my time in the darkness to help others in a similar place. So, once I have the next batch of hospital appointments out of the way, Im think of going along to a Samaritans training open day to see if they might be interested in a half deaf, half blind volunteer with novelty purple legs.

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Isn't life a very interesting piece of modeling clay in our hands- art to be moulded for ourselves and others to experience.

I myself have lost a lot of vision. I will share with you so you might learn and take this knowledge to your doctor and see if it's a puzzle piece.

Auto immune optic neuropathy. If you look it up on Wikipedia it is even cited there as going with lupus and APS. I've lost 35% of " functional vision."

My optic nerves are quite thin and my discs are as " pale as ghosts" my neurologist says. My standard eye exams are not so bad, I can read the standard eye charts... but put the in the real world setting and that's where things go terribly wrong.

A lot of is is in brain itself. " neuro processing integration / re- intergration problem with eyes and brain."

My neuro Opthomologist said it think about it this way:

" imagine I toss you a red apple to catch. Think about actually what all is involved with that. The brain instantly divides up all the information coming at in into specific parts of brain- color, speed, 3-d ( I have none) how high or how low, where your hand needs to be in relation to the apple, when, etc, and THEN, the eyes and brain need to be in perfect time to re syncs the information , or " integrate" as my neuro Opthomologist termed it, for that apple 🍎 catch to go smoothly.

This is not going well for me. It's awkward and ... well. Often I might find a splatted apple on the floor.

Thanks, APS. Didn't really want apple sauce!

If I close my eyes I sway. Ear, brain balance problem also....oscollopsia is starting, scotomas, it can look like I'm looking through gossamer.

A higher INR should keep further damage from occurring, but it is not helping things resolve.

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Hi Kelly

Thanks for your reply. The apple sauce reference made me chuckle. But sorry that you are having major problems with your eyes. It does sound a bit like what I have and I will mention what you mentioned when I see my neuorologist next week. I use to be pretty good at catching in cricket but now I think the ball would continue straight past me or end up smack on the side of my head. I developed visual snow last year and things shimmer and seem kind of cloudy. Not to mention the ghosting/ double visoon. Amazes me that I ever hit the right key on the keyboard.

The more I read on this site the more I think that I could have vasculitis or maybe APS or maybe both. I hope not both as that would be five autoimmune conditions which is getting near the point at which I wont be able to remember them all.

I hope that your eyes settle down and there is no further damage.

best wishes

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Hi Charlieab,

Also if you have got HS/APS you should perhaps not rely on the Neurologists as we have found here that they do not "get" what it is all about - too thick blood that has to be properly thinned at a stable range.

Read "Sticky Blood Explained" by Kay Thackray. She had neurological symptoms (I had micro-embolie and they are not seen on a Scan of today) from her eye and also balance etc.

If you get a referral to a Rheumatologist be sure he or she is a Specialist of these unusual autoimmun illness we all have here!

Best wishes to you from Kerstin in Stockholm

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Hi Kirstin

Thanks for reply. What you say makes a lot of sense. I have an appointment on July 5th to see rheumatologist (I will have to learn how to spell this word i think). He is a specialist in vasculitis but also knows about APS so Im told. I dont hold out much hope for the neurology appointment tbh but will pop along all the same.

I will certainly read that book if it turns out I have APS. It sounds very good

Thanks again and hope u are well.

best wishes.

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Vasculitis could be a subset of APS, not necessarily an autoimmune disease in and of itself. I now have vasculitis and even " thrombo vasculitis " as now seen on Doppler sonograms . If I am understanding correctly from what my doctors are telling me, it is inflammation of the superficial veins. ( the ones they are seeing and where they are scanning.) The doctors are telling me it leads to more clots, and indicator of more DVT's- which definitely has been the case for me. I will make a general post on this soon, and a photo. I've just been too busy. My point: vasculitis may oy may not be an independent auto immune disease in and of itself. For me it's certainly linked with APS as the epithelial cellular layer of veins and arteries are being damaged by the antibodies. This was explained to my by Dr Robin Brey at University Texas Health Science San Antonio - neurologist who is APS specialist.

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Thanks Kelly. I think a doppler would be helpful for me and will ask about this. The GP was relucant but he has not been a shining star in the last six months.

What yous say is fascinating and sounds like it could be very relevant to my situation.

Thanks again for all the info.

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I'm sorry, Charlie, I was rushed during last response. I meant to type " thrombo-phlebitis " as well as " phlebitis.

It was seen on my Doppler sonogram.

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Hi Kelly,

Interesting! I will read that post of yours.

Kerstin

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I keep telling myself I'm going to get to doing this post, because I need to learn from others about this vasculitis and phlebitis with clots ( thrombophlebitis.).

But then events just keep happening with more questions. More topics. More conversations. I suppose I can just post three or 4 separate posts with pics and test/ exam results ( best way to officially explain) and post and just look like a narcissistic person that day on this forum....

I think it will be very educational. I need to learn a lot. I hope others will learn too. Professor Hughes was very interested in my case for two reasons:

1. Not because Im so special, but exactly the opposite! Because I'm so typical! In fact Im so typical that Professor Hughes said I'm a , "full house." In the card game of poker, that's a term meaning all the right cards are in your hand, you have them all. ( almost all of the things that APS can affect, I'm having. - except my liver seems ok, my bones are in good shape, and no major kidney issues with me. I'm having little heart pains, but nothing huge . No hyper tension- no defects found. I think just sludgy blood causes a little angina sometimes.)

2. Of particular interest to him is the neurological manifestations. Seizures, balance problems, probable TIA, declining neuro cognitive abilities, memory loss, declining fine motor skills, vision / brain loss/ etc.

He knew I'd share info with many USA doctors his clinic letter of keeping INR higher. ( and the normal nature of titers to fluctuate from positive to negative, then to positive again. - so don't stop anti coagulation medication as my hematologist in Texas did because I went from positive titers to then negative. Fortunately my internist didn't agree and took over the Coumadin management and sent me to Professor Hughes. ( with the blessing and support of some of my other team members, like rheum, who didn't know how to properly manage my APS/ HS.)

They were baffled because my INR would not stay in target range despite continually raising warfarin ( Coumadin) dosage. It kept falling. They were calling it " refractory APS. "

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Yes, we learn so much from eachother, don´t we?

Keep well!

Kerstin

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Thank you for letting us read this!

Best wishes from Kerstin in Stockholm

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"When life gives you lemons, make lemonade." Reading your post was the perfect way for me to start my Sunday! Often what gets us through is not so much enjoying the support of others, as it is the ability to offer support TO others.

Right on! Groovy! ( Oh wait. You're across the pond. I should instead say...) Brilliant!

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Thanks Gina. Nicely put. Though, I sometimes think that "when life gives you lemons, make a whisky and lemon". Except Ive cut out alcohol on account of it being inflamatory. Same reason I dont follow politics anymore!

I think we use to say groovy here too a few years back. Makes me think of that great Simon and Garfunkle song. Feeling groovy again one day would be brilliant.

Hope you doing well today.

best wishes

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Brilliant!

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Thanks Julie. :)

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Wow what a story!!! I remember when I lost my leg, I was in a heart hospital I use to work in! There was a lady next to me that was 88 yrs old and obviously had a heart problem!!! Her grandson was in that day and they said good by! At that moment I weird feeling came over me and I said to myself OMG I must stay awake all night tonight because she's going South tonight!!! At the change of shift, All of a sudden I hear In a frightened voice "Debbie.!" I have one leg and a walker very far away! I start screaming and no one comes!!! I'm about to start crawling out in the hallways to get help when they come running! They fix her fast and nurse says to her, if u have a problem tonight, call us! Her answer is, No I'll call Debbie! Nurse said ok u call Debbie! Her family came in and thanked me for saving her life! I shall never forget what she said That she'd call Debbie! I live with that joy everyday of my life! So yes we must keep on Trucking! I have my pity party days, but I'm up and about again and Yes as soon as these leg people get my Complicated Prosthetic Leg right, I will run again! God Bless You and Your Selflessness!!! What a wonderful amazing person you are!!! GODSPEED!!!

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I can see why you always remember that day. That was really something special.

Thanks for your kind words. But tbh Im a pretty self-centred person atm and kind of angry at the world and his cousin. But Im hoping that I might get back some of who once was.

Take care. Let us know how it goes with the leg people.

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No ur not! Ur on here ur one of us! Where r u from Charlie

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I think meeting somebody with an acute problem whether mental health or physical health related can make us re adjust our own situation. When you next see your specialist - (a Hughes Syndrome/APS) one, please do check your Thyroid function, and be aware that some of us do detailed private tests as usually only the unreliable TSH is done, if you have a Thyroid problem your brain fog will be much worse, also check your vitamin B12 and your D, I also gave up gluten which helped my brain function also. I hope your medication is the right one for you. MaryF

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Thanks Mary. Following your advice to someone else, Ive asked my GP for thyroid test and vit D. I know my B12 is good, maybe from so much marmite. Im trying to give up gluton and will keep trying.

Thanks again and hope you enjoyed Glastonbury.

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