Does anyone have any experience of the immunology dept at Frimley Park Hospital.

[phoenix77]

My GP wants to refer me to them to find out what on earth is going on with me.

[Zamalek]

Hi there, Initially I was diagnosed at London Bridge with Prof.Khamashta after a retinal vein occlusion, and 20years

of ill health. I transferred to St.Thos. and was seen there for about 3-4 years, and only from Dec.13 I had my

first appointment under the Frimley Park team. My first appointment was with Dr.Deacock, she is I believe

the more Senior immunologist, then my second appointment was with Dr.Karim who is of course on the Hughes

Syndrome self-help list of regional specialists. I have had extensive blood tests done, which had not been

carried out at St.Thos, for 2-3 years, and I will be seen every 6months, blood test I think once a year.

It is obviously early days with the current immunology department, and I was of course already diagnosed,but

they seem very thorough. I believe I may be seen by either of these two Specialist, but certainly if you prefer

a female doctor, then she is available and extremely pleasant. There is from my point of view, the added

bonus of being within the local area as I live in Wokingham. Hope this helps.

[phoenix77]

Thank you that is very helpful. And it's kind of nice to hear from someone so local to me, I'm in Bracknell

I really want this referral as my previous haemotologist was only concerned with the blood/clotting aspect.

I don't know if this is common but I have a fear of being told that it isn't hughes after all if I go to a new doctor. I've had the diagnosis almost 10 years with signs of it for more than twice that long but still...

[Zamalek]

I have been on Warfarin for 5 years following the clotting incident. I have tested positive for lupus anticoagulant

and the anti-beta glycoprotein. For a formal diagnosis, I had to show positive on the blood tests for two sets

of tests. Where were you diagnosed and have you had a clotting incident, and is your Surgery in Bracknell?

[phoenix77]

I was diagnosed after losing my daughter in the 20th week of pregnancy (10 years ago next wednesday - 7th May). I was being seen at heatherwood but delivered at wexham park. Initial diagnosis was done at heatherwood by Miss Spring who then referred my to Prof Leslie Regan's clinic at St Mary's. They saw me and confirmed diagnosis but as we weren't planning to try again they referred me to the haemotologist there, Dr Schlebak. I saw him for a few years but he was only really worried about the blood results so last year he discharged me as I was haemodynamically stable.

In my teens I had a single fit and lots of migraines, then at 16 I had a DVT as a result of the contraceptive pill. At 18 I miscarried at 13 weeks then another early miscarriage a few years later. Plus more migraines

I'm now getting chronic fatigue, and horrible joint pains mainly in my knees and hips. I also have a sinus infection I cannot get rid of. I take aspirin once a day.

My GP surgery is in Birch Hill in Bracknell and I recently found out that one of the senior docs there had Prof Hughes as his consultant when he was a junior doc (before Prof Hughes descibed APS). He's the one working on referring me to Frimley. His name is Dr George Kassianos.

Sorry, that was more info than you asked for.

[Lure2]

Hi, Hope I do not interupt anything but I read your input and understand that you are only on Aspirin.

You were also discharged from a doctor beeing "ok" and "stable". You have got diagnoses twice and if you have got a diagnose you have APS for life.

When you tell your symtoms it sounds to me as if you need an APS-doctor. Hope you have got that doctor now!!!

Good luck from Kerstin in Stockholm

[phoenix77]

Not yet Kerstin but I am working on it.

I am justabout to start the process of getting my notes from all respective hospitals and collating them then I need to find some good research papers to back up my case.

[Hidden]

What a hassle when all you need is a referral.

I think it is too risky to discharge you when someone has a propensity to clot - serum results may not show everything / or give you the whole picture. There is a level of malpractice / ingnorance in doing so. Strong word, I know but the degree of recklessness, I think it's fair to say so. You can become disabled or die from clots when the doctor is oblivious enjoying his home life, weekend golf, holidays abroad and a lovely sports car etc Being a doctor is highly profitable but it comes with ethics and responsibilities x