i posted last summer - simple partials?

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then they don't know fuck all about epilepsy do they. it's a LIFE LONG, INCURABLE disease. if they want to tell you it's anxiety and not epilepsy they need to know what epilepsy is in the first place. to hell with the NHS, try to get one appt with a neuro and he will tell them just that - an epilepsy diagnosis is FOR LIFE, regardless of surgery or implants, or even being seizure-free for 20 years. stays with you whether you're seizing or not. arghhhhhh!! this is pissing me off!
 
Is that written anywhere, that epilepsy is for life? Something i can show them on Monday?

The other trouble is, that the neurologist i get to see appears to be very smart, involved in recruiting for the SANAD trial and everything, but he specialises in Parkinsons, not epilepsy. And i dont "get to choose another one" - this is the NHS.
 
Ever thought they might be retesting you for your own good? If they don have any records of you, then they have no record of any diagnoses. You could walk into a gp surgery and tell them anything at all (that you have epilepsy, had a heart attack 6 weeks ago, that you were born with one leg and had another attached when you were a few weeks old!), they test you again to ensure you are getting the most appropriate treatment. When a prescription is written, the responsibility and well being of you the patient falls onto the doctor, so of course they're going to want some evidence (otherwise they could be giving you totally unsuitable things)

Maybe I'm on the doctors side as this the industry I work in, or maybe I have just never come across now of these rude gps... But the doctor is only trying to o their best for you... There's two sides to every story...
 
Its not quite like that, its not like they have 'no evidence' and that I'm claiming stuff with no proof...
 
More to the point, if he was well within his rights to be like that with me, why did he phone me and apologise three times in one conversation?
 
leoniedelt said:
More to the point, if he was well within his rights to be like that with me, why did he phone me and apologise three times in one conversation?
Click to expand...

If that's aimed at me, I didn't say anything like he was within his rights to be rude to you.... I'm sure you can appreciate he has to protect himself as we'll as you. At least he had the manners to call and apologise to you.
 
He didn't until the consultant told him to - part of the consultant's response to my pals complaint was to 'have a word with the registrar.' That said, he was very apologetic...
 
nope, old GP's office has nothing. records jettisoned, no mention of me whatsoever in their records.
 
take a look on the net (reputable sites only, either med journals or E sites), and you will see that it is noted as either a lifelong or chronic disease. reason being is that even if you go 20 years seizure-free it can come back at any time. you won't find anyone that really knows what they're talking about label it as 'curable.' one can have surgery for removal of the cause and there is still a chance the seizures will strike back, sometimes years down the road. people get their license back, start leading a normal life, have children, and BANG! you're doing it all again. meds can work well then one day they can stop and either have to up your doseage or switch altogether. it is lifelong, and any good neuro should know that. and if they argue with it, ask him to put it in writing that it's curable. he'll back away faster than you can say 'fuck you.'

also ask him to tell you why (by my epileptologist when discussing surgery) that she figured it was best to stay on one of my seizure meds for life, just to be safe. if it wasn't lifelong then.........?
i so wish i could help you :(
 
Saturday i have my MRI. Monday i see the consultant. Pray for me that he listens. And thank you.
 
well i don't pray but fingers CROSSED and BIG HUGS.
 
"people get their license back, start leading a normal life, have children, and BANG! you're doing it all again."

This is what happened to me, i think.

what i'm struggling with is why the neuro seems to think that is such an implausible scenario? Why i must've developed an anxiety disorder rather than the very sensible idea that the E has come back, slowly, over the years, while i've been unmedicated (with anticonvulsants), and told it was only anxiety?
 
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MRI yesterday was very brief. 20 minutes, no dye. 2.5T machine. I wonder how it will compare to the old scan, where i had gadolinium contrast dye?

Tech said that the NHS love to go for the "cheap diagnosis" so that's probably why i keep getting fobbed off as an "overanxious person" rather than being taken seriously, considering my history.
 
Got my diagnosis. Complex partial seizures. Will find out when i get the letter from him whether its TLE or what.

And breathe!
 
big sigh of relief and smile from ear to ear for you right now! that is so awesome!
complex partials suck ass but it's way better to know than not. good for you lonnie, for the diagnosis and for sticking with it!!!!!
 
I started a post today if you will read it. I called bursts of fear "terrors". It sounds similar. I was questioned whether I had panic attacks or seizures. I was finally diagnosed with petit mal because it was long ago. Now it is updated to simple partial seizures. There are so many variations though. Nothing seemed to bring them on except it happened every few months and I had many fearful seizures during 2 day increments. I had so many disappointing doctor appointments that I just cried every time I went to another. Don't give up. The neurologists have to do some trial and error with meds. I tried 3 kinds of drugs that did not work. Keep track of your meds. If you are fed up, tell them to give you another. I got lucky finally, went to a new neurologist. My first visit he got me on the right meds. They did not work until I took them for 3 months! It took between 2 to 3 of years of trying different medications before the right one worked. Hang in there, you have support!
 
Hi - i was just diagnosed 2 weeks ago with complex partials - and i reacted quite badly to lamotrigine. I'm seeing a consultant tomorrow to discuss changing meds, but i have no idea what med to express a preference for, if any. I dont want to gain weight though, that part is crucial. What did you end up on?

And thanks xx
 
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