Sticky Blood-Hughes Syndrome Support
8,078 members8,317 posts


Hi Everyone : ) My Sis (Karen) is being batted around (since Spring) over here (U.S.) from hospital(s) to nursing home(s)....She has been diagnosed at one doctor / hospital as having APS back in summer. She has never been set up with a rheumatlogist or a haematologist. She has been experiencing EXTREME pain (on a 1-10) of 9. The pain is in her back and her hand and has been constant for over 2 weeks now! They have perfromed xrays and blood test that "show nothing" and have placed a brace onto her hand/wrist which she says offers a little comfort. I just can't help but think that a Rhumy or blood doc could alleviate some of her pain! Not yelling at you guys, just yelling out of frustration, you seem to be the ONLY ones that understand her plight, her pain and our frustration. Thanks for letting me vent : ) Lene'

14 Replies

Hi Lene

I have Aps now on Warfarin. I have been seen at local Hospital, Neurologist who didn't diagnose me for 15 yrs . Haematologist discovered APS put on Clexane then Wafarin a bit too late Heart attack and oesteonecrosis death of bone caused by lack of blood supply.I was Diagnosed by Dexa scan then Bone biopsy.

I feel your sister needs to be refered to Haematologist, Rheumatologist.

Good luck

Love Karen xx


Thank you Karen,

So sorry that they cannot diagnose people sooner...countless lives must be lost, thank Goodness you are still with us. We must find a way to raise awareness worldwide!

Thank you for sharing, I agree with your last comment...I need to find a way to get her current healthcare staff to think like us. Wish me luck!

love and hugs!

Lene' and Karen


I am no doctor and this is just a suggestion - please correct me fellow sufferers if i'm wrong and i'll remove this, but is it worth trying her on baby asperin (provided she's not on other medication)? you don't need a prescription and it seems to be a massive help for so many ailments but in this case it does thin the blood slightly... I don't want to seem irresponsible so please ask for medical advice but maybe worth a shot until you get a better diagnosis??

Otherwise, I'm sorry, we sound like a broken record - keep pushing, keep speaking to more doctors and somehow, you'll find a way in and someone will give you an answer...

Good lucjk - we are thinking of your sister - and you!



she is on blood thinner and steroids (not sure how much at the moment as the dose is up and down). she is also on dialysis for PKD and her poor kidneys do not work anymore at all. She is a very complex case that is difficult to medicate as it is, but it is my opinion that a rheumy and blood doc may be able to alleviate her pain???? thank you so much. If you think I should try baby aspirins after hearing this, I can suggest it to her current doctor, absolutely! Love and hugs, Lene'&Karen



yeah your right baby asprin would help as long as confirmed with doc.



yes always ask your doctor before starting any meds even baby aspirin.....


lene i dont know if you may have read some of my antic,s i made copies of , symtoms, blogs, the actual conferrance in texas with all the doc present. i take these to my docs and ask if they have read them, if not i tell them i will leave them with their nurses and they can explain them to you. it may be pushy , but it has worked. have you tryed this aproach ?? let me know bfn jet


I LOVE this idea, I cannot hurt to ask them to read these. Karen has them all, keeps them with her like a Bible....maybe she can get one of her health care staff (doctor) to read her choices. I LOVE THIS IDEA! Thank you! LOVE&HUGS...Lene'&Karen


Hi Lene,

You could try contacting these two organisations they may be able to give you a bit of support in other local docs to refer to

I think you can also try what every one has suggested giving info and keep pushing. I do have a book let that i blogged before have a look below link and shove this under there nose




Thank you Paddy. LOVE&HUGS, Lene'&Karen


Hi Lene and Karen,

Sorry Karen that you in so much pain!!

So sorry the med teams driving you crazy at the minute. Can be so frustrating trying to get them to listen. The others have given good advice, aspirin could be used as well as warfarin,

There are potentially so many meds that could help with the pain.

Keep pushing for an appointment with a rheumatologist or a haematologist. Is definately needed. I think sometimes shouting doesn`t hurt!!!!

I really hope you can get some help.

Feel free to rant anytime.

Take care, gentle hugs, Sheena xxxxxx Jessielou xxxxx


The best of luck with all the advice an info so far Mary F


Be persistant !!! She needs to see a specialist sooner rather than later - Its a shame we have to fight when we know that something as important as this needs looking at. Don't let them fob you off-you are entitled to see someone. It sounds like your sister is in much pain so you need to take action - now ! Good luck x



how are things going ?



You may also like...