Questions - APS

[crista1]

Good Afternoon. I was wondering if anyone could throw some light on what I should or should not do. Over the years I have experienced a number of health issues. From a young age (7 yrs) I have had trouble with my head, for example I would black out if I over exerted myself or if ill, and on a number of occasions have what others may call 'fits'. I had a number of stays in hospital, but told ' I had a thin skull' and on another occasion after two lumber punctures told we don't know what it is, and was then released with no follow up.

I started wearing glasses at five and stopped at 10 years old, only to be told I needed them again at 17. At 19 after having them tested again, I was asked ' why are you wearing glasses, you don't need them'. At 47 I now need them again, but due to older age!!

I have had migraines for a number of years and on at least two occasions my eye sight has disappeared for a number of hours. I slept and when I awoke, it felt like I had, had another fit. I did not get this checked stupidly. This also happened when I had a medical procedure at hospital when they were investigating why I could not get pregnant. They had to abandon the procedure and put me on a ward. At the time the reason this happened could not be explained.

I have not been able to have children unfortunately. There is a possibility I have had at least one miscarriage in my mid 20's, but maybe more.

I have had fibroid's which have been removed, and was told that my blood pressure had gone dangerously low during the operation and my heart had stopped for a short while (this also happened during a camera procedure when they found out what they said was H Phyoli - possibly spelt wrong sorry). I also had a fit whilst at hospital when they gave me a needle (the doctor asked if I had, had my heart checked out, I hadn't)

I have had times where bruises have appeared for no reason. In the last year this as happened at least four times, the last time a week and half ago.They mainly appear on the left inside arm, above the wrist, but also on the left leg. My ankles sometimes swell, a nurse friend said it looks like I have an edema on occasions.

I feel constantly tired, it doesn't matter how much sleep I have, I still feel knackered!!

The APS was found by accident just over two years ago, during a routine blood test. The hospital specializes in 'Sjogren's syndrome' which my mum has. So they did a test on my blood. The first one came back as a high (over 70) for APS and the second came back the same. I was told it should read under 10 for it to be classed as normal?

Mum has had two strokes and as a number of other ailments (she's coeliac) and grandad did of a massive stroke (on dads side)

I have tried to do what the hospital said, after them asking ' have you had a stroke, no, (but not sure if I haven't had a TIA) 'have you had a heart attack', no, well forget you were told you have it and get on with your life. I have been doing this, but in the back of my head with the different things which have been going on, I feel like I could possibly be playing Russian roulette!!

Any ideas please?

Sorry its so long x

[MaryF Administrator]

Hi, you are on the right track and thank heavens you now have a diagnosis, however where are you based, as we do have a data base of clinical staff who have good working knowledge of APS. You must have somebody to join up all the dots for you. Incidentally as a trio of disease, as often mentioned by Professor Hughes himself, Sjogrens,Disease, Thyroid Disease and APS/Hughes Syndrome go together and with Thyroid issues is it is very common to be a Coeliac or indeed gluten intolerant. You need to go armed with all the link to our charity website, to the nearest professional you trust so far, and ask them to refer you to somebody off the list of professionals suggested. If not in the UK, please let me know also, as we have members from all over the world on here, and their local geographical advice along with some of ours is invaluable. Mary F x

[crista1]

Thank you Mary.

I am based in Manchester.

I have been told I do not have Sjogrens or Coeliacs.

It was the Oral Med hospital which found out by chance I had APS. They then referred me on to a different department. But the consultant stated she did not know anything about APS/Hughes and had asked another consultant before I arrived about it.

When I told her I had not had a stroke? or a heart attack. She stated ' I'm not sure why they have referred you then'.

I walked out more confused than when I walked in!!

I was thinking about paying to have scans etc. But wouldn't know where to start.

Thank you for your help.

Kind regards

Bernie x

[crista1]

Mary, can I self refer to a consultant, or would I need my G.P to refer?

There is a Prof Ian Bruce in M/C.

Regards

Bernie x

[MaryF Administrator in reply to crista1]

You need a GP referral via the NHS system.. but to go privately you can normally just self refer.. extract you most recent NHS blood tests from surgery/hospital.. as it may keep costs down, or act as a starting point. Many of us have had to do this private route due to poor diagnosis, especially if seronegative despite dangerous incidents. Best of luck. Let us know how you get on. Mary F x

[crista1 in reply to MaryF]

Thank you. Will do x

[crista1]

Hello.

I forgot to mention I was diagnosed with Rheumatoid Arthritis in my arms in my mid twenties after a scan, and was then told by my G.P at the time that I would be in a wheelchair by the time I was 30!

That has not happened, and I no longer have that G.P!

Can I say what a wonderful site this is and that I have gained alot more knowledge from looking at it. Keep up the great work.

Love and light

Bernie

XX

[Lure2]

Hi Crista1,

I have read the above but I wonder if you are on Warfarin or some anticoagulation? Perhaps you have written it and I have missed it. (I am from Sweden).

If I were you I would try to find a professional who knows APS without delay!

Mary is helping you with this information.

I will think of you and wish you the best of luck.

Kerstin

[crista1 in reply to Lure2]

Hi Kerstin. I am not under a hospital or on any medication at all. The oral med hospital referred me to see a consultant who did not know anything about APS/Hughes. At a loss really. Obviously don't want to wait till something negative happens, so will go and see my G.P to discuss. He as recently taken over from my old G.P. Hopefully he will refer to see Prof Bruce in M/C.

Thank you for replying

Bernie x

[Lure2]

Dear Crista1,

I have APS and I am on warfarin and I am also rather wellinformed of the symtoms and the risks with APS.

I am sorry to say but I think you are playing some sort of "Russian roulette" as you mention above.

Please PERSIST to see prof Bruce or someone who knows about APS!. I think you need Warfarin or something like it. Do not wait.

I am sorry I cannot help you because I live in Sweden. Best of luck!

Kerstin

[crista1]

Dear Kerstin.

Thank you. I am going to contact my G.P tomorrow.

After I saw the consultant who told me to forget I had been told I had APS, it did make me loose confidence a little in the medical profession. It's said that the medics know more than us, but that isn't always true is it?

I've found out more about the condition from this site, than from any professional!!

Hopefully my G.P will take what I say seriously, and refer me to Prof Bruce, if not I shall pay.

I think because I have been living with certain conditions for years, I have learnt to deal with them in my own way. Which is not the right way I know. Lots of little niggles, plus low mood and depression, which I know ca be caused by this condition.

Thank you for the nudge. I will let you know how I got on.

Bernie

[Lure2]

Dear Bernie,

I am so glad you will persist. Professor Hughes says: "Listen to the patient". I do hope your doctor will do that. Many, many of us have experienced when a doctor is not interested because he has never heard of or even bothered to read about this illness. That is why you have to be so strong and believe in yourself that you know something is wrong.

I am glad that you did not find me too persistent. We hope to hear more from you.

My very best wishes go to you.

Kerstin

[crista1]

Just a catch up. I got to see my G.P recently who agreed to send a referral to Prof Bruce who specializes in APS/Hughes in Manchester. In the meantime I went to see a consultant in relation to a different matter and had a scan on my womb, where a blood clot was seen and taken out. I was told after two positive blood tests I had 'Cardiolipin M Antibodies' (a year and a half ago ) I feel I have had TIA's in the past, but until I am seen by Prof Bruce and am hopefully scanned, I won't know for certain. I have again this week bruised for no reason and did so three/four weeks ago.

I am afraid that I will be sent away and told there is nothing wrong after I have seen Prof Bruce. Would the fact there was a clot in my womb be taken into consideration along with the bruising, loosing my sight on three occasions, brain fog etc?

I am on no medication at all.

Thank you for any answers

Bernie x