Success at last - blood tests positiv... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Success at last - blood tests positive - confirmation and relief!!!

emmaj profile image

Hi all - not too sure if you'll remember my posts regarding the struggles ive had with my sight/strokes/struggles to get recognised despite 5 tests of positive anticardiolipin antibodies previously - but I went to St Thomas' at last and i have showed positive, My IGM levels have consistently showed as elevated and the doctor I saw has confirmed that I have always tested positive and never should have had the struggles and the problems with consultants that ive faced. He also seems to think that a genetic trait in my family of early onset dementia could in fact be caused by Hughes rather than a gene. Confirmed also by the fact that my mother was never actually given a post mortem and the reason for the dementia was poor blood supply to the brain on cat scan. This has relieved me no end,and I feel so much more positive for my future and that of my childrens. The doctor I saw is such an amazing man, with such passion for his work I really dont know how I can ever thank him. Emotions were very high and im only just coming back down to earth I think, im so glad I went and fought for so long to be heard for the sake of my family - all the best for the new year xxxxxxxxxxxxxx

13 Replies

Hi hon,

I do remember your posts hon, sadly a familiar story a lot of us tell.

I'm so glad your appointment went well and you now have answers. The relief is obvious in your post hon, thank goodness for that! I'm glad you have some peace of mind and can now get on with treatment etc. I hope you're feeling better soon.

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)

Hi Emma

What a wonderful New Year for you.

This must be such a relief. What treatment are they putting you on now?

It is sad thought that your mum was not diagnosed with APS but times change, albeit slowly, too slowly sometimes.

We are all here for you.

Best wishes.

Dave xxxxxxxxxx

Thank you - ive started on warfarin and aspirin already - and now hes started me on mega dose of vit D to boost my levels, also may try hydrochlor ...................... something or other when I go back in 6 months. I still feel really tearful strangely enough and the thought of the lost babies that had to be sacrificed and they no doubt saved my life - as a mother you always want it the other way round eh?? xxx

MaryF profile image

Hi there, I am pleased you have some definitive resolution to help make sense of some of the dreadful things which have been so stressful for you so, wishing you all the best for the future and hope it helps your family in general. Mary F x

Emma such a relief for you and i fully understand the emotions and tears - the exasperation of not being listened too and properly treated whilst enduring countless preventative miscarriages and health issues must have drained you over the years - but now you can move forward ;-) and be seen and monitored at St Thomas's so happy for you well done with your persistence kathy xxxx

Relief! When I was first diagnosed some of my friends and acquaintances obviously thought me to be bonkers because I seemed, and I was, actually happy to be diagnosed with a life long, uncurable chronic disease.

They just don't know, do they?

I'm delighted you finally got your diagnosis. Let's hope your original docs glean some take home knowledge.

I am completely delighted that you had such a positive consultation and that you saw a compassionate Doctor.

Keep in touch xxx

I am still being worked up for possible APS. My question is was that the only elevated level was the IGm? Also how many occasions was the testing done? Do you have the actual levels were they in the high positive? or moderate? thanks sorry for all the questions. Also can you tell me the all the lab panels that were completed.

Happy Days, Emma! I am so pleased you found a knowledgable physician with compassion for his patient and a willingness to share his knowledge. I hope you can develop a long term, relationship with him and you can learn from each other on your journey. (Insert happy dance here). Now just put one foot in front of the other and get those meds adjusted and fine tuned and you will be well on your way to any goal you set for yourself. Who knows, maybe you could get this doctor to write an article for the Forum or Patient Day? Rally his buddies? Good luck. Don't go away now. We all want to know how you're doing.

Warm wishes, many smiles and a big congratulations! Mission accomplished thusfar!


Thank you all so much for your kind words,he was as exasperated as we are the struggles us hughes's still face in 2010. I would really like to do some fundraising to support his work - and im thinking of how to do it - not sure a marathon run will go down well with anyone with this condition ha!!! Maybe we could all do a sponsored sleep marathon that would be more managaeable (unless the restless legs/muscle spasms/sleep problems put pay to that ha!!).......... He asked me if i came on to this site and I said id been on here for a while now and he seemed pleased. Im just so glad that finally I have the acknowledgment,and wont ever be ridiculed for feeling tired/not with it, and in time a little understanding from people will come when more people are made aware of it and recognise it as an actual illness. People with ME in the 80's had the same struggles as us,yet now its more known about and understood - maybe one day for all of us that will happen. For now, no amount of wishing this away will make that happen but for future generations we may just make a difference the louder we scream and the more we persevere. If any babies are saved for the awareness being raised then its worth it all - maybe my daughter will never experience a lost little one, as nothing can ever hurt that bad xxx

that pain never goes, I'm afraid, but you do learn to live with it and move on. I lost two children at two days old 30 years ago and they are still part of me. I wish you all the luck in the world for your future journey.


it was dr khamashta x

That should have read 2013!!!!!!!!!

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