Help

[lorac1]

I had some blood tests taken about a month ago ordered by a Rheumatologist and went to the GP for the results. The abnormal ones are High ESR, High CRP, Low APTT, High Serum IgM, High IgM beta2Glycoprotein, High IgG beta2Glycoprotein.

5 months previously I was unwell and a Locum GP ordered bloods and CRP and ESR both came back high, although the others I mentioned were not tested for and no one informed me that they were high.

The GP I saw has faxed the Rheumatologist and asked him to refer me to a Haematologist as the results were all to do with blood clotting and she felt it needed looking at.

I have never had a Stroke, TIA, Embolism or anything similar, to my knowledge.

I would like to ask for help and advice from all the knowledgeable people on this site. Do you think that Hughes is a possibility, or do you have to have some kind of clotting episode before it can be diagnosed?

My thank sin advance of your replies.

[Lure2]

Hi and welcome to this friendly site,

We all have APS here. I will try to answer your question.

You do not have to have a stroke or TIA to be diagnosed. You can be diagnosed by positive antibodies taken twice with (I think) 12 weeks between the bloodtests. They have to be positive. I do not know if they have taken it twice on you.

The bloodtests are: Antibodies to Kardiolipin IgG and IgM, antibodies to Beta2Glycoprotein 1 and antibodies to Lupus Anticoagulant. There are also others but these are the main ones for having a diagnose.

You only have to be positive to one of them to have a diagnose.

There are two things that are important and that is to have a diagnose and also to have an APS-Specialist.

If you have an APS-doctor who understands this illness he will give you the right treatment. We have to be right and well anticoagulated as we have too sticky blood. We can live a good life with this illness if we get a diagnose and an APS-doctor!

Where are you from? If you live in England please look at Hughes-syndrome.org/selfhelp and specialists in your area.

There are good books about APS for sale on Hughes Syndrome Foundation charity website.

I prefer "Sticky Blood Explained" by Kay Thackray. I have it in pocket and it is very good. She has APS herself and you can read about all the symptoms with APS.

Please tell us how it goes for you!

Best wishes from Kerstin in Stockholm

[lorac1 in reply to Lure2]

Thank you Kerstin very much for your kind reply. If I am diagnosed then that is the first book I will buy.

[PepperT]

Can I ask what your symptoms are?

[lorac1 in reply to PepperT]

Hi PepperT. Please see below.

[lorac1]

Sorry if I have not given you enough background information. I was diagnosed with SLE in 2011 and at the time the bloods were taken I had had two episodes of vasculitis within a 6 week period. There was no mention of APS or any reason given by the Rheumatologist as to why he was ordering these tests. I had previous bouts of vasculitis but my former Rheumatologist was not interested. I have looked at the symptom list for APS and at the moment I have memory problems, Joint pain, swollen ankles and feet, breathlessness, and am always fatigued. In the past I had a miscarriage at 12 weeks gestation, dizzy spells that were so bad I couldn't walk straight and couldn't see because my eyes seemed to be bouncing around in my head. Perhaps you think I am jumping the gun but I was very shocked when my GP said she wanted me referred and I felt I needed to seek information, I like to be prepared.I live in Wales now.

[Manofmendip in reply to lorac1]

Hello lorac and welcome

As my colleague APsnotFab has asked, where are you from, as this helps us to help you more specifically.

Dave

[lorac1 in reply to Manofmendip]

Hello Dave. I did reply to ApsnotFab yesterday and gave her a lot of extra information, hopefully enough to go on. I have given some history and background and also where I live. Carol

[MaryF Administrator in reply to lorac1]

If in the UK we can direct you to our list of specialists off the charity website, and if not so, it is by member support ie, who has been where and with certain success. All the best to you. MaryF

[Manofmendip in reply to lorac1]

Hello

Thanks for that. You can find specialists in Wales here: hughes-syndrome.org/self-he...

Let us know how you get on.

Best wishes.

Dave

[lorac1 in reply to Manofmendip]

Have already looked thank you as Kirsten pointed me in that direction yesterday.

[Manofmendip in reply to lorac1]

Ok

[Lure2]

I can very well understand that you were shocked!

I recognize some of your symptoms so if you get two positive bloodtests you have to look for an APS-specialist near Wales (if that is possible). You can also ask for a referal from your GP to the Specialists in London. Do not give up on looking for your specialist and if positive do it as soon as possible!!

There are many here that are sero-negative and then the APS-doctor has to look for the symptoms to have a correct diagnose.

Best wishes from a rainy Stockholm

Kerstin