Anyone her been diagnosed with Hughes syndrome as well?

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Anyone her been diagnosed with Hughes syndrome as well?

Postby JemmaB88 » Sun Nov 18, 2012 5:23 pm

Hello All,

Apologies for not being around for a while.

Just wondering if anyone has been diagnosed with Hughes syndrome, or antiphospholipid syndrome since their Fibro diagnosis. The reason I ask is that I have been getting worse recently and had new symptoms appearing etc. I posted a little while ago that I am having tests for MS now as I have been getting numbness, tingling and tremor sensations in my limbs and eyes have become a big problem now.

I had my eyes tested and the prescription is a carbon copy of my last test 2 years ago so they are fine, but something is wrong. Routine blood tests came back normal but I am still not right. Very, very tired, all the time. Even after a good night of restorative sleep, I am exhausted all day. Often in bed by 7:30/8pm. I am a 24 year old newly wed, I should be up all night!

I am having an MRI on my brain in January, so that will be interesting. However, something else has occurred which is really weird! A friend of my mums asked how I was and she started to whole horrid story about this problem I am having and her friend produced a book from her handbag. It is about Hughes syndrome. All she said to my mum was, please get her to have a blood test. Its nothing special, the GP can do it.

Mum popped over that afternoon and said to me that she has spoken to this very thoughtful lady and that I was to read this book and call the doc. So that's what I have done. I had the bloods taken on Wednesday and I will see the GP on Friday for the result. It would make a lot of sense if this is what I have. But I have read that the normal diagnosis procedure is carried out after you experience pregnancy problems or have a DVT.... I don't really fancy going through either of those before I get anywhere, but the doc is very very understanding of me, even if I do come across as some kind of hypochondriac! I just want to feel well and with the MS thing hanging over my head, I am probably clutching at straws.

As I said before I started rambling, has anyone here got both Fibro and Hughes? Is that possible?

Thanks all,

Hope we are all feeling not to bad at the moment :)

Jem.
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Re: Anyone her been diagnosed with Hughes syndrome as well?

Postby shazq » Sun Nov 18, 2012 8:18 pm

Hi
No i have never been dx with it, i have put a link up about it so others know what it is so they can see if they have it.

http://www.netdoctor.co.uk/diseases/fac ... olipid.htm
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Anyone her been diagnosed with Hughes syndrome as well?

Postby Bobbi08 » Sun Nov 18, 2012 10:06 pm

Hi, I have it along with Lupus and Fibro..... Don't get any major problems with it.

You have to 2 positive results and other symptoms....

Hope you are ok and good luck for your MRI in Jan xx
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Anyone her been diagnosed with Hughes syndrome as well?

Postby Ragdoll3 » Mon Nov 19, 2012 2:30 am

Hi I have Antiphospholipid Syndrome it has caused me 16 miscarriages & 1 extremely premature birth. I have had numerous scares of DVT's. it is very difficult to diagnose Antiphospholipid as it comes and goes in the blood it's a case of catching it at the right time. I take Clopidogrel & Atorvistatin. I am in the process of being tested for Lupus & Vasculitis.
I hope you can get an answer ;)


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Anyone her been diagnosed with Hughes syndrome as well?

Postby Bobbi08 » Mon Nov 19, 2012 3:42 pm

I am so sorry Ragdoll for all of your losses, it must be heartbreaking for you. I suffered 2 miscarriages and can't take the pill because of fears of DVT,s so mine only came to light after my dx of Lupus and it showed in my blood work so as I said mine doesn't really cause me any issues apart from headaches..

Hope you get some answers with regards to Lupus xx
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Re: Anyone her been diagnosed with Hughes syndrome as well?

Postby shazq » Mon Nov 19, 2012 4:45 pm

It seems to be a link towards lupus as you all have it.

So sorry to hear about your miscarriages :hugs:
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