At a loss what to do.....

[Simon_james]

Since the early 90s I've suffered various bouts of losing my speech, loss of balance, confusion and so on. In 2005 I had a real doozer where I was hospitalised for 5 days and was later treated for 6 months with dysphasia. Another episode, I collapsed on Bournemouth Pier, was laid for quite a while, listening to people laughing at me saying I was a druggie or a drunk, I couldn't communicate, next thing I can really remember is coming around in hospital......you are getting the picture.

My father has been diagnosed with Hughes Syndrome, my sister has miscarried 4 times and is now being treated. My latest episode on Wednesday resulted in me being sent home, the doc telling me I had a migraine, not for the first time. Apparently I am a young healthy man with no issues. What can I do?

[MaryF Administrator]

Hi there, sorry you are having an awful time and also not being listened to. Please go back to your GP, they need to conduct the tests suggested on our charity website, if you feel overwhelmed by this, please take along somebody with you to the appointment to act as an advocate. I did this myself for somebody the other day, albeit with a different health problem. I was happy to sit in the room opposite a non listening surgeon and help my friend achieve the desired results with their care, politely and firmly with good note taking! Also if you look at our data base of clinicians, there will be some in your area, and you could refer yourself privately to try and remove the blocks and get some intelligent care going for yourself in the NHS. Please come back to me if you need help finding the pages required on the site, for the information suggested: hughes-syndrome.org/

Please do not lose heart, may of us have been in a similar position. Also feel free to email the secretary of the GP with the website, you need him to refer to the nearest consultant in your area.

Failing this, you could ring London Bridge and self refer, Professor Khamashta has a shorter waiting list than Professor Hughes. Mary F x

[Simon_james in reply to MaryF]

Thank you very much, I will do that. I've apparently been tested for this but the tests have returned negative. If negative again, what on earth could it be, surely not migraines.

[MaryF Administrator in reply to Simon_james]

You may have just migraines, but a lot of us are Sero Negative, which means you have it, but have not passed a test yet. ard.bmj.com/content/62/12/1... sciencedirect.com/science/a... orpha.net/data/patho/Pro/en...

This is why many of us go to London Bridge! An unfortunate attitude but nevertheless alive and kicking currently. Mary F x

[Lexi_Img]

Did the doctors consider TIA's. because of your APS?

[cadusis_seeker]

Migranes can cause loss of speech - what causes the migraines might be Hughes Syndrome (APS) or could be another one of many causes.

Worth finding a migrane specialist who is APS aware.

[Andrewl]

It took me two years for diagnosis, and thanks to Dr Anniele Hung in wishaw, and Dr Lishel Horn, then Edinburgh royal, now Leeds; I was finally diagnosed. Keep at them, and as Mary says, head for London if needs be. Keep at it mate, and stay strong.