Hughes Syndrome

[JFH]

I'd never heard of this before either until I saw this on the BBC web site.

http://news.bbc.co.uk/1/hi/england/suffolk/5273968.stm

John Simper, 60, from Ipswich, is convinced he has been suffering from Hughes Syndrome which thickens the blood and slows down the brain.

This condition, discovered in 1993, mimics MS but can be easily treated with blood thinning drugs or aspirin.

Mr Simper has now started a crusade to make the condition more well known.

[JFH]

And there is a good come back on the story here

http://www.guardian.co.uk/medicine/stor ... ss&feed=11

Multiple sclerosis campaigners today questioned reports claiming that hundreds of people have been misdiagnosed with the disease.
The Multiple Sclerosis Society warned that the vast majority of people suffering from this progressive disease of the nervous system should not draw false hope from claims that 5% of them in reality have a less serious condition.

[harvey]

I was told about this condition through my mother inlaw. I think she was hoping that was what i had . Went to gp and asked for the test he had to look it up but sent me for them , it was negative. I think i was abit relieved sounds a bit scary to me .

[HUTTO]

so do people that have hughes syndrome have lesions as well. or maybe this is for the ones where the mri doesn't show anything but they have active symptoms.

[lyndacarol]

Is Hughes Syndrome also known as Antiphospholipid Syndrome (APS) or are they two different diseases? I know about APS, but I haven't heard of Hughes before this.

[Lyon]

oo

[JFH]

I've been thinking about this overnight. It's worth noting that John Simper, the protagonist in this article, was diagnosed 26 years ago. I'm not sure what the state of play was in 1980 with MRI scanning - certainly it cannot have been as good as it is today. There have been I'm sure many misdiagnoses, I suspect recent ones are "safer".

So what do we conclude from the story. IMHO John was diagnosed and likely had a neuro that wasnt much interested in MS so he was, like a lot of us IMCO , written off. In those 26 years, if my experience is a measure, he would have had no more than 30 ten minute consultations always ending with a pat on the back and "see you same time next year". And it leads me to think I should start to look for an MS Specialist.

[Alicia]

Hello!

On this website under the Q&A section it talks about white dots on MRI of a Hughes Syndrome patient versus Multiple Sclerosis patient.

http://www.msrc.co.uk/index.cfm?fuseact ... pageid=736


I think these articles about Hughes Syndrome are very interesting. I have heard for so long that MS is probably a catch all for many neurological diseases. I would like to be tested for Hughes Syndrome. As far as I am concerned a glimmer of hope is better than no hope at all. It's worth a shot!

Alicia