Sticky Blood-Hughes Syndrome Support
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Anyone else feel like they are being pulled from pillar to post ?

Hi all

Well I'm six months in since my first consultation with the consultant at guys and I'm getting more and more disheartened as time goes on so far I have seen opthalmology ( right temporal hemianopsia diagnosed ) cardiology ( arrhythmia diagnosed) MRI shows small areas indicating recurrent Tia , ultrasonic angiography show nothing major .

Seems every time I see another speciality I find out something else is wrong , I see a different specialist in a week at guys to test for MS , ear nose and throat still to come regarding hearing loss , neuropsychology to assess the cognitive changes and further tests regarding eyes and heart .

Nothing positive yet out of six months of almost weekly visits to London , was started on plaque nil and INE range increased but I still feel myself going downhill .

I'm so tired of it all I really am never seems to be any light at the end of the tunnel spent my 32 birthday in bed

Any words of wisdom from anyone on how to stay positive ?



5 Replies

Thanks for answering my other post - I felt exactly the same, i had stroke affecting the occipital lobe,and for two years was told mri's were clear by neurologists and given the allclear, after a cateract was found that took them off the beaten track for a whie, only for another neurologist to look at my scan (by chance) and found the stroke evidence - and now im having blacking over of my eye and opthalmologists say my eyes are fine its something behind and i need a neurologist - got one of those who said 'dont know' then i saw a neuro-opthalmologist who deals with both - he still doesnt know!!! Got to st thomas' and finally found my pot of gold - to be told now - he doesnt know and i need a neurologist!!! Paul Holmes really is my last hope - i just hope it works out. It seems that youve got to where I need to be so feel positive about that I hope you can.

It seems that what we have is the neurological MS symptoms side of APS, I get the muscle spasms and twitching and nerve pain from it,plus the eye problems - I think everyone is different. I hope you get something from the appointment, and I think at first its just relief of getting a diagnosis at first,then reality of what has happened to you and the fighting youve had to do kicks in and you get on a downer - its natural - we can fight what we can face,but now knowing is hard.

Plenty of people on here will be ready to give you a kick up the bum when you feel down,which is what we need sometimes, but also show support and to know that you arent alone. Tiredness magnifies everything and i have recently found that my 50mg pregabilin actually helps me to sleep at night,maybe you could ask your GP. Take one day at a time,write off the bad ones and revel in the good,and remember to pat yourself on the back often,forget about anybody else opinions or having to justify how you feel. Take care of yourself xx


Thank Emma

The eye problems are a worry I started bumping into things and just thought I needed glasses , optician said I had optic neuritis raising suspicion of MS . Saw a not so good neuro ophthalmologist who said something has happened but he can't tell what and I need to be registered partially sighted ,

Eventually I got to see the medical eye team at st thoms and if you can I suggest dr Elizabeth graham or proffessor mile stanford both highly specialised medical opthalmologists.

I was diagnosed with temporal hemianopsia after it deteriorated further and basically I cannot see anything from the middle of my visual field to my temple on the right , my optic nerve is swollen and I have blood vessel abnormalities but they feel it is a problem in the optic nerve and could be a stroke ( look up anterior ischemoc optic neuropathy ) .

I do still get blacking over accompanied by dizziness and whooshing in my ears and some of that could be attributed to blood pressure and my cardiac arrhythmia which I have just been diagnosed with , do you have any other symptoms when you have these episodes ? Could be worth asking ?

I just need to find my fight again I guess it's tough but I will get there .

I will let you know how it goes when I see Paul Holmes

Wishing you all the best Dan


Dan, the light at the end of the tunnel is only ever temporarily turned off believe me I know. My advice would be to try and find one consultant who coordinates everything and everybody. Otherwise as you quite rightly say you get no where. It's the same as being on a roundabout and you just go round and round getting dizzier and can never get off. You do need answers I understand that but being diagnosed with illness after illness and not having a reponsible physician to answer you question and coordinate you care can be so frustrating and frightening. I think that things get overlooked that way and that Doctor's loose sight of the patient in the middle of all these diagnoses they are so busy making and you're litterally just passed from pillar to post.

Perhaps if you spoke to your GP they may be able to make any suitable suggestions for you, or somebody at Guy's? Spending your 32nd birthday in bed is sad news. I was retired on the grounds of ill health at the age of 36. Don't let your life pass you by. You have the power to control what happens in your life. Take what you want from it. I'm not giving you 'the proverbial kick up the bum' as I'm waiting to see if I have to have my leg amputated as we speak due to my illnesses and am lying in a bed in intensive care. It's only my advice that I found worked well for me. I found that by taking control I could turn that light back on at the end of the tunnel and I can't look back and regret that I didn't live my life to the best of my abilities taking into account all my illnesses and disabilities and it's made me feel much happier too.

Wishing you all the best in the world Dan.

Love from here InSpain xxx

(Please excuse my spelling - don't know if it's brain fog or all the medication or both but my spelling is Sh1t at the moment!) :D


Hi inspain

Firstly I would like to wish you a speedy recovery and glad you are well enough to be active on the community again . Brain fog will lift intensive care medications are awful for that after my three brain surgerys last year it too at least a week or so for me to feel slightly normal after spending three weeks in a drug induced coma but you will get there .

I can imagine you have lots on your mind at the minute with the possibility of losing your leg but stay strong and although I went through the same ( lost my right leg at 24 due to APS related complications) no amount of reassurance will take those worries away as i still remember it as if it was yesterday , all I will say is for me it was not the end of the world but the end of a long period of pain and suffering with a leg that was severely damaged and my prosthetic leg affectionately known as "Percy" to my nieces and nephews does a better job than the leg that was there before .i will say if you need to talk to someone with personal experience of amputation if it comes down to it feel free to message me .

Your words of encouragement were brilliant I mange to stay strong pretty much all the time but as we all know it takes a toll and we have lulls just need to work it out and carry on .

Wishing you all the best and sending you luck

Love Dan


This might sound odd to some people but I too would like a 'percy' so that I can walk, or even try to walk and get some independence back. I can't even go to the loo without help (and I'm not talking about here in hospital - I'm referring to everyday life!). I understand what you mean about how things take a toll they do. It can be so frustrating and sometimes quite a downer to think about how things 'might' have been. Through many struggles I learnt to stop looking over my shoulder and thinking about the past. I now concentrate on the here and now and look forward to tomorrow as another day. I don't have any expectations just plans for things I would like to do or achieve. If there's a day when I can't do those things I now think 'well there's always tomorrow'.

Thanks for your good wishes. They mean a lot to me. Hope things work out for you.

Love from here InSpain xxx


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