cant understand what is going on

[iwasaruunergirluntil]

i have antiphospholipid syndrome, initially i had a stroke, then seizures, now i have antiphospholipid syndrome, narcolrpsy and now dignosed with lupus. what is going on i also have polyneuropathy in my feet and it is starting in my hands. what is happening. can someone explain

[paddyandlin]

Hi iwasaruunergirluntil,

I hope you are under a good doctor because it sounds as if you being pushed from piller to post!

In my opinon i think the antiphospholipid syndrome (APS) might of caused your stroke and seizures and you normally find that people who have APS normally have another autoamunie or other illness in your case it is narcolepsy and polyneuropathy. I know there was someone else asking question about that so i hope you might compare notes BUT....

To get answers you need to have a good doc are you under St Thomas or another hospital and regaing information on APS I am assuming you are in the UK you can get information from the Hughes Syndrome Foundation see link below

hughes-syndrome.org/

Or you can ask us on here we are not medical people but we have lived this illness and have spoken to enough people and read enough books to give you info and if we can we can try to help you find out.

Paddy

[Suzypawz]

Oh hun, sounds like you have a lot happening to you all at once, it is a lot to take in & I can understand you wanting an answer to it all

I hope you are getting support off docs that understand as this helps a lot, we can answer some of your questions as best to our knowledge but as Paddy says we are here to support each other/give advice but we are not medical.

Hope someone can help you.

I have Antiphospholipid syndrome, possible fibromylagia, menieres & raynauds, so I can only help you with that side of it,

all the best, Sue. xx

[MaryF Administrator]

Hello, it sounds very confusing and upsetting, as said above, I hope your GP has referred you to the right place, you need a good modern ear with some practical advice as soon as possible. Tons peer support on here to back up the medical help, which hopefully you can get sorted. Do keep us posted on your progress. Mary F x