Can anyone tell me if checking for sticky blood is the same as checking for the clotting of the blood ???
I had a blood test carried out some years ago for sticky blood that was carried out over three days....the results showed sticky blood !
I was put on asprin but this was stopped due to gut problems but as far as i know my blood has not been checked since....I have had a clotting blood test carried out..
Are the two tests the same ?
Dear Jillymo
I'm not an expert on blood tests but checking the clotting time for blood (the Prothrombin Time), which is what happens in an INR test, does not check for the levels of antibodies, which is what the tests for Hughes Syndrome (APS) does.
Have you been diagnosed with Hughes Syndrome? If not, what symptoms are you having that may suggest that you could have Hughes Syndrome?
I see that you are in Swindon. We are setting up a Bristol/Bath and area group and we are meeting outside the west door of Bath Abbey at 11.00 on Saturday 20th April.
Best wishes.
Dave
I did read about the new group that your setting up but it is out of reach for me.....I am not a car driver.
No i have not been diagnosed with Hughs....I have Hypoparathyroidism, Hypothyroidism & Fibro Myalgia, Osteo Arthritis...I shant bore you with any more.
I had a ' very ' bad turn in 2011 at the time i was convinced it was Lupus complete with butterfly rash......I have had 2 boarder line results.
David the symptom list is endless i dont know where to start.
I have ear & balance problems....Tinnitis
Sjogren symtoms.
Body over heating & i mean over heating.
Pins, needles,,,numbness, strange sensations running over my body.
Burning sensations in legs like neuropathy.
Gluten allergy....gut pain
Bowel problems
Brain fog, Scaring on the brain, memory, headaches.
My voice goes croaky, breathing laboured, wheezing.
Muscle cramps, cronic lethargy.
David it is making me cry to write it all down.....I am praying theconsultant at the
Churchill i am awaiting to see can give me some answers.
My Son & I both have auto immune problems.....Sorry for such a long mailing.
Jillymo
Thank you for being so brave and sharing this with us.
Is there any way you could get either am referral to Prof McHugh at the Royal National Hospital for Rheumatic Diseases (The Mineral Hospital) in Bath or a private consultation with Prof Hughes or one of his team at The London Lupus Centre. I think that it is essential for you to be honest.
Bath is very easy by train from Swindon, if you are able to use trains.
Best wishes.
Dave
Good morning Dave,
Dave i have been to the Hospital in the past 2011 i saw a Dr Gemma Strictland for FM.
She passed my notes onto a guy that was taking interest in my case, cant find the letter at the moment to tell you his name.....sods law.
The hospital system would not provide transport for me to get back & see him....i was choked i felt he could help me.
London is out of my reach unless i get hospital transport but with all the cut backs it is all now a battle.
It's the walking & lethargy that are crippling me.....at the moment it's a very icky tummy & i feel a bit tight in my chest.
I have a taxi coming to take me to opticians, will let you know how i get on. Thanks For your help.
Hello there . . . I noticed that you are in Swindon - so am I! - I have Sjogrens/Lupus which I have done for years but as of last year I now see Dr Elizabeth Price at the GWH - she is really good and takes a special interest in Sjogrens running special clinics for it in Swindon at GWH. I've had the tummy problems over the last year or two but seem to have helped that by changing my diet (no wheat now). Anyway - just wanted to mention the Swindon hospital contact - maybe we should be setting up a Swindon group for autoimmune stuff! Take care x
Hello lucy, you are not far from me infact you are where my son lives.
Yes I have seen Dr Price then i was passed over to
Dr Lyne Williamson & although very pleasant she new nothing of hypoparathyroidism & tried to pass me off as depressed !
I am now seeing a consultamt in Oxford at the Churchhill & awaiting to see a Rheumy at the Nufield Hospital.
Have you been diagnosed with Lupus ? I have had two boarderline results.
I now have the symptoms of Sjogrens with the very dry eyes, mouth & nasal passages.
If only i had the energy to set something up ijn Swindon
but i'm like a wet rag at the moment.
Thanks for coming you take care to.
Sorry for the typo error i ment to say for coming over.
Love the Kitty what a little darling, i lost my dear old moggie on the 20th of March.
I still miss him so much.
Sorry to hear you are being passed from pillar to post with the doctors. I've had some autoimmune disease or other since childhood - it was juvenile arthritis when I was 16 (except it wasn't but that is what they thought at the time but they couldn't understand why my liver and kidneys packed up back then) - then it was lupus when I was in my 30s - now I'm 47 (well tomorrow actually ) and it's now Sjogrens - give it a few years and no doubt it will be something else again. I think you probably need a prescription for a new puss cat - they really are excellent medicine aren't they.
I think the doctors get fixated on one particular thing and they don't listen to what you say about other symptoms. I don't especially want to take any of the immunosuppressant drugs at the moment but all the doctors want to do is prescribe and get you out of the room. It is very helpful finding forums like this as you get some really good advice from others on here - plus it's always good to know that you're not on your own.
I hope you manage to get some answers so you can get the right treatment for you and you can start to hopefully feel better. x
HAPPY 47th for tomorrow Lucy i hope you have an enjoyable day.
My cat was my life but i cant have another, i moved home last year to a bungalow & i dont feel it is right for another cat as much as i would like one.
I had trouble carrying my old friend to the vet in the end.
I nearly moved into one of those bungalows near you opposite the community centre cute little place with nice garden. I had to turn it down they wouldn't put a wet room in for me....my son lives by the manor house, I am now in Stratton.
I hope i get some answers soon it has been a heavy old cross to carry.....& my life is slipping by, i am now 61
My son has the same illness as I Hypoparathyroidism....but i supose due to my age.....I now am blessed with Fibro Myalgia & Osteo Arthritis.
Did you read that poem by some lady called Sissy the other day ? It was so apt with the way this illness makes us feel that i sent it to my consultant.....He came back with we all feel like that at times.....he's having a laugh & hasn't a clue what this illness is like.
May i ask what Dr's surgery your with is it the new one going down to Morden ? I go to the one by the big Tesco, dont know why they are usless.
I used to live on the Broadway near Hillier's before my divorce.....yes this illness wrecked my marriage.
I would rather have my cat back than my husband ! ' he was far more loving,' :).
I think like all of us on here all we wont is a bit of our lives back
I hope we get it. X
Hi Jilly - You made me smile about your comments about husbands versus cats - I think there's one of those wooden decorative notices you can get with words to the same effect! It's a shame you can't have another mog - maybe one will come and adopt you in time. 61 is no age - life does seem to race past without you noticing doesn't it. I'm an old mum - my second child is only 7 (due to the Hughes/Lupus and miscarriages!) - should keep me young but I don't feel it. I am at the Home Ground Surgery near Morrisons - they are nice enough there but you can't easily get to see a doctor and never the same one twice. They don't know who you are any more like doctors used to do - it's a shame - there's no interest shown in you or concern for your needs as a human being. I'm off to see an osteopath at Oxford Brookes Uni Clinic at Ferndale on Wednesday - I've never had treatment like that before but the Sjogrens flare I've been having has really caused a lot of muscular pain so I'm going to see if it makes a difference - the GPs won't do anything and I'm not due to see the rheumy again until October. Do keep in touch - I will look out for your name on here - do you use the lupus unlocked group or Sjogrens group as well? The lupus one is very active. There are good people out there. Lucy x
Your right in what your saying gps have lost the connection with the patient.
It took me three weeks to get an appointment last time i went & i was only aloud to mention one ailment.
Its like beat the clock, maybe i shall take an egg timer next time...so i know when my time is up.....as you said you never see the same one twice.
it is very much the same in the consulting room at the hospital.
I have lost faith in them, i'm sure they are getting a bonus in there wag packet to kill us all off
that way they save money & thats what it is all about these days...nothing to do with care 
I have looked at other sites but i like this one.
You can learn a lot from other's & yes there are good folk out there but shame they are all so unwell.
I cant say i have heard of the Oxford Uni Clinic, how will you get there are you a driver....hope it helps.
I did a bit of gardening the other week...just putting bulbs in with a dibber.
my word my arms & shoulders the next day were agony.
I get a lot of pain in my lower back that prevents me from doing certain things.
Gosh where do you get the energy for a 7yr old....keeps you young they say.
As for the cat ......that was how i got him he adopted me....so glad he did.
Nyt nyt Lucy
Hello Dave,
I rang the GWH eye clinic but was told to go to my optician who was off work today ! 'Just what you want at the start of the week',
I managed to get seen in the Boots opticians, luckily no damage done to my eye it is just sore.
I was told to increase the usage of the lubricating drops.
Boots are going to write to my doctor to see if he can push my pending eye appointment forward.
When i came home i pursued my appointment by phoning the hospital to find the consultant i was going to see has retired & left them short staffed.....I might have be sent to another hospital.
Have you ever heard of a Rheumy at the Nufield Hospital called Prof
Paul Bowness ? This is whom i have been refered to , so i have been onto his bookings to chase my appointment up.
Well done me
Hi Jillymo
No I haven't heard of him.
You really are getting the run around, aren't you. Poor you.
Dave xx
I have just read your history seems like you have had a rough time.
How are the funny turns now ? I get those feelings of cobwebs strange aren't they.
Have you had to give up work Dave due to your illness ?
I find some of the symptoms are hard to discribe but the one i dislike the most is the brain disfunction.
Do you find your mood can suddenly change ?
I used to get very bad migrains in my teens but now i know when i am going to be bad i get a dull pain in between my eyes.
I hope you are keeping stable, it really is horrid to constantly feel so unwell.
I have just come across LucyLocket in swindon she is not far from me.
Thank god for this site Dave we are no longer alone,
it refreshing to talk to others who understand.
I am so glad you have a good consultant looking after you, now i have got to find the same. nyt nyt
Sticky blood is another name for APS-- some tests can be carried out rather quickly - my diagnosis took 6 months because of the type's of tests that need to be done. i would double check with your Dc. and find out just what you were tested for ??? --- jet
Your making me work hard but i am trying to take all in that you & david are saying.
Bless you both....i am writing the relavent testing down to bat to my consultant in the morning to see if these tests have been done.
He has done some testing for antici oagulant but an error was made so they have got to be repeated.
The errors are frustrating when the appointments are 6 mths apart.....it is one error after the other....The last boarder line result has got to be repeated, the gut hormone i mentioned in my last mail to you something peptides should have been done fasting ! ( what a joke when you travel to see these so called specialists )
Can APS come and go, like having lupus flair ups? 
Misscarriage and migraine
APS and covid19
Different INR readings from Finger pick and lab. 
