Sticky Blood-Hughes Syndrome Support

new to website

hello everyone, have really enjoyed reading all your posts. i was admitted to tommies 8yrs ago by dr d'cruz for tests, had a positive mri and lumber puncture for ms but negative blood test for aps but had a history of 5 dvts and multiple miscarriage so needed to stay on warfarin forever . i was given cyclophosphamide (think thats how you spell it) prednisolone drip azothyoprine , well kept this up for a while but stopped after 12months now just have warfarin. i don't have any consultant for anything now and find things a bit difficult tried a local neurologist for a while but he didn't feel i have straight forward ms but doesn't really believe in aps, so when i asked him well what do i have he said he doesn't know so just left with my poor old gp to deal with but feel a bit lost as i don't feel i belong anywhere. on my doctors notes my official diagnosis is a demyelinating syndrome with blood disorder i feel ill with ms symptoms but they are relieved with high inr but find it impossible to maintain inr feel a bit lost and alone thanks everyone for taking the time to read my long moan , mully

9 Replies

Hi there, I am not surprised you feel a little compromised! Can you possibly get a referral to St Thomas' from your GP? Do you have any paperwork regarding visits previously to St T's. Or could you contact Dr D'Cruz secretary to get copies of old letter/info to copy to your GP. Be calm and persistent, I truly understand the frustration, lots of us on here have had similar paths to diagnosis. If you have good contact with GP, you may find that they will write for you. Keep a list of your entire medical history in bullet points, all episodes and symptoms to date. Having a modern and user friendly GP is the biggest hurdle to get over. I hope this is of help, keep us posted and the best of luck. Mary F


Hi Mully,

Welcome to the site. ;-0 Sorry to hear of your battle to get recognition of your condition... how poor is that for a neurologist not to believe in APS??? antibodies fluctuate so it may be worth get a referral as Mary suggest. It could be you need all the screening test done again given your history or at least be considered for sero negative APS. It might be worth also doing your own research, quite often checking out your local rheumatology dept's may give you an insight into what they specialise in... it generally tells you there interests, specialism within rheumatology for example then ask your gp to refer you if he wont refer you to ST Thomas's my gp refused, i couldnt afford to go privately but am glad i did my own research to find a research trust that's team including nurse specialist understood aps and for me fibro as i have both diagnosis.

Good luck hope you get some answers soon take care kathy xxxx


hello i can understand your frustration i to have a neurologist who says i cant have aps cos i dont have all the symptoms and my blood test arent positive he wants me to have another lumber punture and he cant understand my mri scans really think i should see someone else and i hope you can get to see someone who understand


Hi Mully

Sorry to hear about your problems. Prof Hughes says on his blog and in his talks that he sees many patients that have been mis-diagnosed with MS. I am not saying that is what has happened in your case but it certainly warrants a second opinion given that my understanding is that APS can cause lesions to form that are seen in a MRI brain scan.

Being seronegative is not a reason to dismiss APS out of hand so it is very important for all of your clinical symptoms to be carefully evaluated.

As others have said if you can get a referral to St Thomas Hospital I think your mind would be set at ease or if you can afford to go private for the purposes of a diagnosis then the London Lupus Centre is worth every penny.

We will all be rooting for you.


Hi mully

welcome and glad to meet you, sorry you having a rough time of it. As the others have said st Thomas 's is the place to get to if gp will refer. Sounds like you have a great helpful gp. Take a look at for good info as well.

I'm glad you've enjoyed reading the blogs etc.

Keep pushing, keep in touch too.

Hope yiu feeling well today.

Take care gentle hugs sheena xxxxx jessielou xxxxx :-) :-) :-)


Hi Mully,

welcome to the forum you are here with friends we have all had to fight are cause and understand the frustration. I am really glad you find the posts useful and i hope you get your answers.

I agree with everyone above you need to continue the fight an get hold of Dr d'cruz and st thomas.

keep us informed



Hi Mully

Often in life the person that is not pushy will get pushed to the back of the room. I see it all the time in my job, The people that moan, are foreceful and pushy get noticed and have attention way ahead of the quiet person.

Perhaps you should go back to your GP and DEMAND a referal to St T. I bet they will be pleased to see you and use your history of APS to everyones advantage!

Go for it, you have nothing to loose and everything to gain,

Hope you manage to do this and feel better knowing you are on your way to seeing people that are indeed experts in APS!




thanks everyone for your supportive comments, i do feel the high dose of warfarin has stopped the multiple sclerosis progressing, but its a strange situation i dont't have remission and relapses like normal ms i find my symptoms are there all the time but only very severe when my inr drops below 3 which is often , can't keep it stable (i self test) my mri of spine and brain showed severe scarring to the brain and spinal cord consistant with someone who had very severe ms plus obviously strong evidence from lumber puncture but i wonder now if an up to date mri would show improvement as all my most troublesome symptoms are not related to ms pounding headaches terrible skin rashes sore joints and at the moment i'm taking anti virals trying to ward off the 3rd attack of shingles this year (the anti virals are fab by the way! anyone else had them they're like a miracle) anyway bored you all enough thanks so much for all the help mully


Hi mully,

It is a stressed pain we all have/or going through to get answers/someone to listen to us & understand plus actually getting a diagnosis in the beginning!

You sound like a 'typical' APS ?! I think they need to test you again & you certainly need to talk to those at St. Thomas.

Glad you are reading up on our posts, we get more info' / sense out of them than seeing docs' to be honest!

Keep strong, we are there to for you anytime you want a chat! :)

Sue xx


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