Hi I'd love some help I've recently had a TIA and think I've got Hughes Syndrome I'm only 39 please can I have some advice ? Thanks x

[Gibz]

[MaryF Administrator]

Hi there, it is possible, and I suggest you have a look at all the information available on The Hughes Syndrome Foundation website, of course a TIA can be for other reasons. However if you have looked at the criteria possible for Hughes Syndrome, then you may be right to suspect if if your history and symptoms fit. You GP/specialist - usually rheumatlogist or haematlogist can also look into this. A simple blood tests can be done, in some people it shows up very easily, in others such as myself, it may not. I have Hughes Syndrome but am Seronegative, having had multiple clots during my first pregnancy, other family members are also affected.

Please do direct anybody involved in your care to the HSF website, there are a wealth of medical papers available on there, Also this unit has real expertise with the condition:

guysandstthomas.nhs.uk/our-...

Also it would help us to know where you are located, as you may have others in your area with some local knowledge. Welcome by the way, you are in good company on this site for getting to the bottom of things and fine tuning your care and diagnosis where possible.

All the best. Mary F x

[Gibz in reply to MaryF]

Hi Mary thank you so much for your rapid reply .I have had more blood tests they have come back with a liver abnormality ??? I'm waiting for an MRI too ! I've looked at the website and am amazed to see thatnive had the following: Migranes/ headaches and a foggy head since a young age,thrombosis/DVD lung,recent TIA which has left visual disturbance and memory loss,pregnancy problems,misscarage,problems conceiving ,early labour,high blood pressure during pregnancy,cold all the time/ circulation??? Do you think I tick the boxes ? I'm amazed that I may have found a reason for years of symptoms not being diagnosed thanks so much Gibz.

[MaryF Administrator in reply to Gibz]

Hi there, it does sound like it! Good luck with your quest, if you have the right medical staff they will sort it all out for you. Mary F x

[Salty]

Have you had the blood testing?

[Hidden]

A TIA will not cause any long lasting problems but the cause should be looked into..

[jessielou]

Hi hon

Welcome and glad you found us, reading through this and your other post, it does seem that you could have Hughes syndrome, Mary and the others have given you great advice. The Hughes syndrome foundation has loads of info you can print and take to your gp. Really need to get things checked out, although blood test results can be misleading with Hughes, I hope you have an approachable gp wh will help with looking for answers for you!

we are here to help and support if we can!

I hope you are feeling ok today.

Take care gentle hugs love Sheena xxxxxxx

[Gibz in reply to jessielou]

Thanks for your support I happen I find results soon and answers to my questions/ symptoms .im feeling very fuzzy as if I'm jet lagged I have no appetite and have a tingling in my hand/ arm is these symptoms you have? Thanks for your concern xx

[john1969]

Hi Gibz

I'm new to this group, but I also have had a small stroke/TIA and it looks like Hughs Syndrom may also be something that I am fighting.

APsnotFab is correct!!

Get an MRI .. mine have discovered some "ball shaped material" in a few areas where I had been experiencing great headache pain in the past.

Also APsnotFab, recommends Aspirin, I take 1 - 2 depending on how I'm feeling.

and it has helped me get through some difficult days, don't take to many without getting that MRI or seeing a doctor to check your vitals and circulatory tests because of the possibility of internal bleeding that will not clot...

I wish I could say more... but please know that your symptoms are shared by others who are looking for the same help.

[lovemyheart]

Ive had the same things...miscarriage, blood clots, migraines...i had a stroke...insist on an MRI it will prevent a lot of problems. Good luck to you, be well...Teresa

[Gibz in reply to lovemyheart]

Thanks for the reply I'm waiting for the MRI but I've got an appointment with Hughes Syndrome consultant on Thursady I hope they can help .Have you been diagnosed ? What happened to you exactly ? Xxxxx

[lovemyheart]

Sorry Im just getting back to you now. I had symptoms for long periods of time. Im 50 now. I had miscarriages in my twenties, and had my two children in my thirties. My second child I had blood clots in my leg and a placental abruption. My daughter was fine thank God. I was 41 when I started with numbness in my hand, on my upper lip and a lightheaded out of it feeling. The neuro I was seeing at the time diagnosed me with pinched nerves. One night my dog woke me up and I had numbness on my left side. I went to the hospital and was told it was acute migraine. No MRI was done. the next day I had a stroke that left me without feeling on the whole left side of my body for 18 months. The dr. I saw the day I had the stroke diagnosed it with an MRI. He said the hospital should have done it then.He diagnosed me with Hughes. he said I probably have had it for years...Write me anytime and good luck to you...Teresa