Just diagnosed, please help?

[Hilariew930]

Just diagnosed. Where do I even begin? Waiting to get a referral to rheumatologist.. I'm only 33. Any suggestions? Is this diagnosis going to be the cause of early death?

[MaryF Administrator]

Hello there and welcome. Firstly it is great that you have had a diagnosis and referral to a rheumatologist - that is half the battle, this is a condition which can be managed very well with the correct treatment plan in place. There is a wealth of information on here, blogs from everybody and information sharing, also blogs from Professor Hughes himself and also very very good information from the Hughes Syndrome Foundation itself. I understand that this can seem like a frightening diagnosis and a bit of a minefield getting started, but you have gauranteed peer support on here. The main thing is getting referred to the correct rheumatologist, one who knows and understand and has experience of APS (Hughes). I am presuming that you have an ok GP, as this is all crucial. The best of luck and lots of people will write to you on here and answer your questions and also reassure you. Once again welcome. Mary F. I have lived with this condition for 26 years and only recently diagnosed! Now 46 and enjoying being a grandparent! Mary F

[Hilariew930]

Thank you Mary! It is scary. I do have a great GP and hope the specialist is GREAT. Found this out because my husband and I were trying for baby. Now I suppose that will be put on hold, but I hope we can at least have one successful birth without any losses before... : ( I know my parents would love a grandkid too. I am really looking forward to this support system. I am so glad to know you are doing so well. : ) Again, thank you.

[MaryF Administrator in reply to Hilariew930]

I have three children all born at St Thomas' first one 22 and a half years back, and two more since, all pregnancies managed on fragmin....so there really is light at the end of the tunnel. So pleased to hear about your GP being so on the case. Having communications channels open and up to date is the main barrier! The best of luck. Looking forward to hearing more from you on here. Lots of us have filled out our own blogs, myself included! Mary F

[jessielou]

Hi hon,

welcome and glad to meet you. Lots of us here felt similar emotions, having a diagnosis of Hughes syndrome is scary, but not the end of the world.

I have children against the odds. So do many others with Hughes although many of us have miscarriages. Treatnent with aspirin and Heparin during pregnancy prevents problems.

With correct treatment and careful monitoring many patients live normal lives.

Glad you have a good gp is part of the battle.

You not alone and we are here to answer questions, listen to rants and moans, so feel free if you need to!!!

A good source of info is hughes-syndrome.org.

Look forward to hearing more from you.

Take care gentle hugs sheena xxxxx jessielou xxxx

[Storky]

Hello

Just wanted to say that I have recently been diagnosed too although it is obvious that I have had Hughes for a long time but not been diagnosed due to being seronegative. Now that I have actually been told I have it and am getting the right treatment its actually a releif

Yes of course its scary but the more I learn about it and the more I talk to everyone here the more I know I can cope - and I am sure you will two.

I am 60 next week and have obviously had this since I had my miscarriages in my early 20's. I went on to have two children and now have two grandchildren.

Yes I had to have PE's and a stroke to find out what was wrong but am now confident that things are under control.

I also have other medical conditions to cope with but you have to stay positive.

Things are improving all the time, research is on going and the future is so much brighter than in was years ago, so I am glad I have found out now rather than then.

You are going to be fine, I wish I could give you a hug but take this as one!!

((((0)))) Please try not to worry.

[paddyandlin]

Hello Hilariew930

welcome to the group. As everyone has said it is great that you have had a diagnosis and referral to a rheumatologist - that is half the battle on this condition.

The condition can be managed very well with the correct treatment plan in place. There is a wealth of information onthis forum, blogs from other memebers and information sharing, and also very very good information from the Hughes Syndrome Foundation itself.

I understand that this can seem like a frightening diagnosis and a bit of a minefield but we are here to help and support you.

if you need help just ask

paddy

[Gadgets]

Hello Hilariew930

I am sure things will start to improve for you now that you have been diagnosed. You will "learn" to pace your self and understand your INR that best suits you and how you feel.

Warfarin got my life back!

Best regards

Garry (yes one of a few blokes on here with APS)

[jonesy1]

I have my first appointment with haematology at the end of December but have been under a rheumatologist for nearly a year now for suspected lupus and I agree very scary to get your head round. My APS was found because a GP at my practice (unfortunately not my own GP who said it would be very unlikely for it to be APS) took my muddled speech seriously and put me on aspirin and this made my rheumy do the blood test. I just have to give up smoking now, far easier said than done unfortunately.

Sue

[Hidden]

Hi Hilarie

I was diagnosed aged 19 and I'm 31 now - I have had a kidney transplant and many complications but I really do think that this vile illness can enrich your life - it can be the thing that spurs you on to take all the opportunities that you want. Please try not to worry but just keep talking to doctors, specialists, us lot... you will get answers and it will get easier. As Mary said, read some of our stories - mine is pretty long so maybe someone else's!!! and if you want to chat, just shout.

Just remember there is more than one way to skin a cat (I'm not sure if that is a British phrase??) - more than one solution to every problem so once you've had a chance to breathe - weigh out your options and do whatever suits you!

Take care

Tx