Finally got response from hospital in Sheffield, a meeting is been set up with haematology and neurology on a Thursday.
Unfortunately the neuro we really wanted has retired, so we are left with our current one. Fortunately we did have a choice of haematologist and one them is the APS specialist in Yorkshire. So guess which one we picked, lol. Anybody had dealings with him?
I have also produced a 3 fold leaflet of our delightful journey over the years and as many symptoms as I can remember (there's so many!) I have sent this to the hospital CEO and to the hospital PALS so they can forward it to the consultants before the meeting.
Fingers crossed the meeting is soon and they actually listen.
My wife's symptoms are still bouncing around and now she she cold, really wish we would get a break. As the saying goes "must have been bad in a previous life" at this rate I must have been "Vlad the Impaler" LMAO.
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geoff0702
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Did your wife buy "Sticky Blood Explained"? Hope she can read it before she will see her Specialist.
Give my best wishes to her and hope she will get rid of her cold as soon as possible. Here in Sweden a lot of people have got a cold. This time of the year it is easy to get it.
Yes we did, both books and one from Professor Graham Hughes, I've read them all, nearly to the detriment of Sunday dinner, lol. My wife is slowly getting there with the book and has limbs!!
Well done on settling on the right specialist, do let us know how you get on, and congrats on the leaflet, being proactive about our personal situations is always a good idea. MaryF
If you are still not on the right track, I saw when i reread your questions quickly, that APsnotFab gave you some good names to Specialist before. Your wife is positive to Lupus Anticoagulant and needs at least an INR over 3 (better 3.5 - 4.0 probably) to be much better (you told us she was better with this regime before) you know that Warfarin in a stable and rather high dose is probably the key.
Thank you, the haemotoligist we chose is on the list. I have been trying to get her INR past 3, even complained at anticoagulation clinic. Saying if we keep her closer to 3 the better she is, but fell on deaf ears. Also tried to get them to stop making her tests more than a week apart, as when they do that her INR goes haywire. The only spanner in the works is a right porital lobe cavernoma, that neuro are determined to stop bleeding by keeping INR at 3.
I think of the answer you got from Sticky Blood Mentor on your question "Lupus Anticoagulant Positive"; She is worth listen to as she knows most things on here:
She suggested Dr Hannah Gordon, D Paul Holmes or prof Hannah Cohen.
As I am from Sweden I do not know those names but know that "Sticky Blood Mentor" knows how to help us. I have been on this site for at least 7 years. I suggest you help your wife through follow those suggestions you have got. There are a lot of not very bright Doctors out there who really do not know much about autoimmun illnesses and especially not about APS, so we have to fight to get to the very best and listen to people who know how to get there.
You are doing a great job for your wife! She is lucky who has got you.
Thank you, will have to see what Sheffield an do first, unfortunately can't afford to get to London. If she's having a really bad day she is literally a ragdoll. I'm her full time carer and we've been on benefits for last 5 years. I will press the consultants to send her to the mentioned specialists, if we don't get a satisfactory response from them.
If your on benefits and want to go to London you can claim your train fare back. Get the forms from the clinic receptionist Doc will need to sign yours as a carer. Then go to the cash office with proof of benefit less than 3 months old and they will give you the cash.
Might be worth a try, but really depends on how wife is. Some days she has no limbs at all and it's a nightmare moving her around. Hopefully trains would have ramps available, as no chance of getting her out of it
Well I give up!! Got GP to refer wife to an APS specialists on the list we all know of, in Sheffield at rheumatology. Just had a phone call from rheumatology saying refferal denied, due to wife not aparently having no connective tissue disorders!
Does anybody know of a proper APS specialists in the north of england? Really fed up of been only one in consultation room that has a clue about APS. Have got a meeting with a haemotoligist that's supposed to be one in Sheffield (at some point), but I'm the the kind of guy that likes plan A-Z in place just in case.
At this point, I'll take anything, lol. Will have words with GP, when we can get hold of her. It will be a good back up if meeting goes south at Sheffield. Which I am expecting 😭. Pretty sure a sent him a email regarding my wife last month.
Yes it was from the Patient Specialist recommended list, I think I've seen his name in several charity sites as well. The refferal was sent by GP, only had their name mentioned in PALS email asking why we didn't see him when diagnosed with APS. Unless that got mentioned to them.
I’m getting up to date on messages etc and have only just seen this. As a back up to St Thomas I see a chap at Castle Hill Hosp Cottingham just outside Hull who is very good and knows his stuff. I think his name is Dr Allsup. PM me if you need more info. My son says I’m getting confused he may have a point!
It's the meeting we've been waiting for at Sheffield hospital with neurology and haematology. Regarding my wife's treatment or the lack of. Will be insisting FND is removed. I have sent a letter to Prof Ian Bruce asking if we can see him, with a refferal. Hoping they will refer us after meeting.
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Lupus SLE also Lupus anticoagulant 
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