Epilepsy

[scottty]

I went to see my gp he told me that the lupus could be the cause of me having fits there treating it as epilepsy iam 40 year old upset x

[MaryF]

and has he checked you out for Hughes Syndrome? Although I am aware that lupus can cause problems with the nervous system in it's own right, it would still be worth checking out. Mary F x

[copdber]

I'm sorry to hear that there's one positive thing tho at least now you will have treatment and once it's stabilised you will get back some quality of life.

[SarahHeney]

I take it they have excluded lupus of the nervous system which commonly causes fits? Good luck with your treatment and hope you start feeling better soon xx

[daisyd]

Hi sorry to hear that it is a real shock at the time, I know because, I have epilepsy, I think caused by Hughes syndrome, small blood clots to the brain .

I was seen by a neurologist and now on medication which has stopped the fits.

He had no idea about Hughes syndrome and after seeing a haematologist, my memory fog has lifted,

So it's not really the end of the world although it feels like it at the time

I hope it is soon sorted out for you too

You might find some help on the healthunlocked epilepsy community site too

Good luck

[Rani23]

I am shocked of what I am learning here. It seems like the doctors whom we depend on so much as they are medical professionals. They can treat us like that. It seems some doctors don't have a clue the implications of this illness. I think we should all get together and start a campaign to bring awareness. I also noticed when i go for check up at the hospital there aren't any information about lupus. what do u think of the idea?

[scottty in reply to Rani23]

I agree to what you say I will fight with you iam learning all the time about lupus we need somone who is famous with lupus who will fight for us

[Rani23 in reply to scottty]

Have you looked at St Thomas's Trust web site? We might be able to get help from there. i will try to contact them. Thanks for replying to my mesg.

[MaryF in reply to scottty]

You really need a rheumatologist who understands both Lupus and Hughes Syndrome, could you get a referral to St thomas: You need to go here;

guysandstthomas.nhs.uk/our-...

If not there are a few specialists who understand Hughes as well as Lupus dotted about the UK, let me know if you want more info. Mary F x

[cloggy73]

Hi Scotty

I'm sorry to hear that you have been suffering from fits, they can be very frightening. I agree with the others here, it is vital that you get advice from a Rheumy and a neurologist and get proper tests done. I was diagnosed as having complex partial seizures after seeing a neurologist and having various tests. I now take anti epileptic drugs and the seizures are pretty much under control unless I have a lupus flare. The seizures are definitely connected to the neurological Lupus. See a neuro who has some understanding of Lupus, it is so important! Good luck to you and let us know how you get on. Take care.

M