sticky blood

[donnabrain]

hi.

I want to ask a question that may seem a bit thick, but I am feeling confused so here goes.

can your blood be sticky and you not have APS?

I shall elaborate..

I was diagnosed in 2006.

I first got tested in 2005 and my antibodies were then positive.

three months later, they were positive again.

I have just discovered that my antibodies have been consistently negative since 2010.

my discharge letter says Aps now resolved.

Does this mean I no longer have it?

I thought you either have it or you don't.

I had emailed the unit as superdrug advised me not to take a third B12 test because the first two could not be worked on (heomolysed) and the rang me and asked about any conditions and were surprised that I was not on any thinners.

The reply I have says your blood is not sticky, your antibodies have been consistently negative since 2010.

I was on aspirin from 2006 until 2018.

my last antibody test was 2017.

[Sevenstar]

Hi there, that's really interesting. I agree I also thought that once you had it you always had it . However ( and please correct me if this is incorrect) but my Rheumi did say that you can test positive after an infection or illness and it might and sometimes does resolve if that was the cause !

Still there is always a lot to learn with this !

[KellyInTexas Administrator in reply to Sevenstar]

Yes. It is possible that an infection or illness can cause the body to throw up positive APL antibodies . ( certain medications or illicit drugs can also.)

This is why it’s so important to have a specialist in the field of APS who works with APS patients day in and day out to help recognize when this would likely be the case or not. ( patient history is so important.)

Once an established case of APS has been determined by meeting the correct protocol, it is true that it is a life long diagnosis.

[donnabrain in reply to KellyInTexas]

I was diagnosed at St Thomas at the lupus unit.

I had two positive antibody tests,three months apart, and the family history ( my father had two strokes, the first one left him paralysed down one side. the second killed him, he was in his mid forties when he died.

The also listed my obstetric history

I had 3 prem babies, each one coming earlier than the one before.

I was hospitalised with both the boys with threatened miscarriages.

I have had one ectopic.

It says in all my earlier paperwork that I have had multiple tia,s, but they are now saying not.

interesting what you say about drugs.

I was on modafinil when I had my first test, as it was originally the sleep disorder unit that referred me to the lupus unit.

I also have thoracic outlet syndrome, diagnosed by the same specialist.

I had a funny turn in Feb of 2017 that has never really been explained properly, my local hospital ran some tests,and originally wanted to keep me in overnight but I had a small child (autistic) left with a neighbour, and had already told the person that would have taken over, to go to bed as they originally said I would be going home, but I ended up being sent home at 2am.

The prof said next time he saw me he thought it was a stroke.

brain scan was clear.

whatever happened that day though, I have lasting affects to today.

[KellyInTexas Administrator]

Donnabrain, please see my response to Sevenstar1.

[Lure2]

Hi donnabrain,

Who did diagnose all those autoimmun illnesses you write about as Sjögrens, RA and a lot of others?

It is very important when haveing APS to have a Specialist of Autoimmun illnesses ( like KellyInTexas also says here). It can be very difficult to distinguish the different illnesses as they very often go hand in hand and sometimes even have some symptoms and antibodies in common.

Is it possible to again contact that Specialist or is it too late?

Best wishes

[donnabrain]

I had a specialist.

he is the one that diagnosed me (not the RA)

he discharged me 2019.

I emailed him last week.

I received reply yesterday evening.

the first few years he was fantastic, then he discharged me the year that the changes from st t,s to guys was happening.

Three months later I was in a&e and the lady treating me asked if I was under a rheumatologist.

I said I had been until recently.

She said I needed to see him urgently.

Told me to see gp Monday morning and repeat what she had said and gp was happy to oblige, asked for me to be seen again, but he said no need as I only saw her 3 mnths ago

I went privately,saw Prof Khamashta, who said he believed there were other problems and that he was going to see me 6 monthly ( on Nhs at guys) and start from the beginning, and " get to the bottom of me"

I was over the moon.

on my first appointment he gave me a hug, apologised on behalf of the unit, took a load of bloods and said we would start there.

unfortunately he then left.

I saw an awful Dr. who looked over the bloods that prof K had ordered, said well your vit D is low,so we,ll give you something for that and we don't need to see you any more.

I said No sorry, and told him what Prof K had said and in the end he agreed to keep me on , annual review only.

the next time he saw me he shouted at me, alternating with whispering, and I spent half the time saying sorry I cant hear you.

I complained through Pals ,and said I would not see him anymore and got my original consultant back, the one who diagnosed me.

we had annual appointments, mostly I saw registrars.

last year I saw him in person and I had some symptoms I wanted to discuss, but it was clear that before I arrived the decision had been made to discharge and he wasn't really listening.

I recently booked a private appointment to try to get some of my questions answered.

the consultant I saw said I don't have sjorgrens,as my bloods are normal.

he said my dry eyes and moth were caused by fibromyalgia.

I have been told by three separate drs that I have sjorgrens, and I have had two shirmer tests, both bon e dry.

I was supposed to be seeing the optician on Friday, but its been postponed til Monday as I am currently in agony with what feels like glass in my eye

I,m getting no relief from the viscotears(which usually help)

Have been using cucumber, which is helping a bit,

the reply I got last night was " your blood is not really sticky,you must have had a faulty test, your antibodies have been consistently negative since 2010, if you want b12 tested you can do so at gp,s on Nhs,your B12 was normal in 2006

[Apples2000]

Wow! That is fascinating! I thought you had it or you did not have it and once you had it, it doesn’t go away. Although I’ve received vague answers from a few doctors on this particular subject which makes me think they do not know enough. Fascinating!

Have you stopped taking blood thinners?

[donnabrain in reply to Apples2000]

I have, and I,m not happy about it

[Apples2000 in reply to donnabrain]

I see. I keep thinking I can maybe get off the blood thinners some day but I’m not sure why I’m so hopeful for this. I keep thinking my diagnosis might reverse someday. But getting off the blood thinners is a huge gamble.

[MaryF Administrator]

Antibodies can come and go, but the disease does not, although it can be calmed a bit with the right medication and indeed the right medical help. Infections and viruses can give a false positive, but it does sound like you had the right diagnosis in the first place. MaryF

[donnabrain in reply to MaryF]

Thanks for that Mary.

The unit seems to be exasperated with me, and insist that my antibodies being consistently negative for the last ten years means I no longer need then.

I was hoping for some other measurement, that I could ask my Gp to do, if that makes sense.

[Wittycjt in reply to donnabrain]

Which tests were done: lupus anticoagulant, diluted russell viper venom ?

[donnabrain in reply to Wittycjt]

I really don't know.

I only know they were positive in 2005 and 2006.

Presumably positive until 2010, as they are now saying have been consistently negative for the last 10 years.

Although the last time they did them was 3 years ago

[Louloubug in reply to donnabrain]

YES YES, U NEED A CRP= C,reactive protein, blood test.

This will check the inflammation in your body, if you also have RA THIS TEST IS A MANDATORY. CRP, OR FSR WILL Determine how much inflammation is in the body. May I recommend too all autoimmune disease patients.

Please arm yourself with an anatomy and physiology course.

Or at least purchase some paperback books and review. I enjoy THESE, you can get book's for instance"dummies" books, I have purchased the "demysteries" series.

Knowledge is the strongest "weaponry" needed when you have a RARE disease.

I'm from Canada. APS is classified as a RARE Disease. Anticardio lips, SLE

[donnabrain in reply to Louloubug]

Is that sometimes referred to as inflammatory markers?

Those are always negative.

Both my local hospital and my gp have commented on the fact that I m a bit strange as they have done them whilst there is visible and palpable inflammation and they always come back negative