So,it's been roughly 3 years since my attack,it was a massive attack,but have since had no further attacks (to my knowledge). I am on an IVIG four weekly infusion which,evidently, seems to be working.
I hear a lot on here about frequent attacks, could you possibly tell me what these involve? And how you know you're having them?
I ask mostly because I have set up a Facebook page to try and help others with the same condition and find myself a little underarmed to deal with some questions. I always direct them here,which, for me was a huge help. However it seems some lack the confidence or tech ability to approach this site. I apologise for my lack of knowledge, but endeavour to learn more.
Also, I have been approached by someone out of Montreal, Canada who is keen to hear from people with this condition.
Thankyou for any help you can give.
Ali the best.