My diagnosis is a funny one, rheumy says vasculitis, lupus and APS but neurologist says vasculopathy; the treatment is the same. The hospital have told me I need to get both rheumy and neurology appointments brought forward and I am unable to drive until. However they haven't given me anything to go on and how do they know if they are seizures or not. Can the things I have cause seizures, does anyone have any advice or information please.
Thank you
Hi there I also just answered you on Lupus UK...it is crucial that you get expert advice off somebody who understands the condition - a list of medical consultants across the UK found on here under self help. hughes-syndrome.org/ Unfortunately all too often neurologists appear to not understand the condition. Some of us get successful referrals to one of the people on the list, others go privately, but you are on the right track. Mary F x
Hi Annie
I agree with Mary.
I was originally diagnosed by a Neurologist but other ones that I have seen, including the last one, are in some kind of denial about APS even existing!
Good luck and keep us informed.
Dave xx
Hi Annie: I am so sorry your having seizures. That's a pretty big umbrella word. In an effort to generally help you understand the many different seizures, I offer you this helpful article:
nlm.nih.gov/medlineplus/enc...
My dx was similar. First I was diagnosed with CNS vasculitis (also called temporal arteritis and vasculitis of the brain. They blew 125 pound, 5'.75" me up to 225 pounds in under one year at 80 mg of prednisone/day plus over 15 other pills. When the disease did not respond I fired my neurologist. Now I was in the hands of my rheumatologist and she began chemo. Unfortunately, she used Cytoxan as an agent and one of the side effects is bladder cancer, which I developed after about 6-12 mo., which I still fight. But, enough of MY story. It doesn't have to be your story.
I think the very word seizure has so many multiple meanings from a vague cause of headache to recognizable patterns on the many tests they have available now to measure and differentiate "seizures" now. If I were you I would add it to my list of specific questions for my rheumatologist at my next appointment. Specifically, is she speaking of nerve spasms, electrical brain seizures, lots of seizures! Don't waste a second or let her get away with a vague answer. Pin her down politely and simply say, "I still don't understand, can you be more specific for a layman?" Her job is to explain to you what her medical opinion is and to do that she needs to identify and analyze the problem and then relate it to you.
Your job is to educate yourself and not waste one moment in her office. Be prepared with a list of questions and ask how she would expect the next 3-5 years will go for you given your specifics. Ask her what is the best course of action you can take to help her do her job.
I think you should be much clearer on the subject if you can cover those specifics with her. The trouble with APS and CNS is they are so similar as are many rheumatologic diseases. We still need so much research. So many diseases produce seizures of all kinds.
Warm wishes on your journey,
CanaryDiamond10
Many thanks for the replies it is much appreciated. I have to admit normally I think I'm fairly positive person but I'm feeling pretty down right down.
Hi, I was having seizures around the time I had my small heart attack in my early 20's. Later, like almost 21 years later I got my diagnosis of Hughes. I was told seizures can happen with Hughes (same with the heart attack) . When a doctor see's my brain scan they think I have MS, but it's the damage from 6 TIA's from Hughes Syndrome. What's your brain scan look like? Perhaps that may help explain the seizures. Hope it helps! RainyNW 
Following my previous posts....now undiagnosed
Seizures in 17 year old
Trouble with cannulation.
Not sure if i had or am having strokes or TIA's
My 6 yr old daughter tested
