Hey Endless,
I sure wish prompt action & good communication came with my neuro & his staff. I've had so much trouble with his staff. One time I called him & he had his nurse call me while he was standing beside her, telling her what to say to me, that I had to get off Keppra & get on Topamax. Three times during that phone call I told the nurse I couldn't take topamax, I'd had it before & had a bad reaction, but she never told him. I decided to try it again, but had the bad reaction again. When I saw my neuro & told him about the phone call, he was upset with the nurse.
Another time, I was having a bad reaction to a med, called in on a Monday morning, she wrote the note & gave it to him, he wrote to get me in immediately that day. She didn't call me until after 4:30, too late to get in that day, but she did get me in first thing the next day.
In Dec., I had myoclonics every 2 minutes all day on a Friday & Saturday. Saturday's were more intense & painful. I called on Monday to find out what to do, but didn't get a return call. The next day, I ended up in the ER from a series of different seizures. His nurse called while I was in the ER to tell me he didn't want to treat me any more, that I was beyond his abilities & was sending me to an epileptologist. I told her I was in the ER at that moment - she didn't even acknowledge it, just said I'd be contacted when my appointment was set up with the epi. I waited 10 days without hearing anything, so I called & was told that my information had just been sent in that morning. Then I asked if I was supposed to still keep my appointment with my neuro the following week & was told yes (I think this was a different nurse from the one who called while I was in the ER). When I went to see my neuro the next week, he didn't even know I'd been in the ER! A TOTAL lack of communication & apparently one nurse or the other making decisions on her own.
And my primary won't touch anything regarding my epilepsy, so it doesn't do any good to talk to her about it. And there are no other neuro's in the area. My epi is about 180 miles away. But my neuro wants to work with the epi, so I won't have to make a lot of long trips to see him. I've been on 13 AED's, currently taking Valium & Vimpat, but they don't really control my seizures. But I don't run to the ER even tho I have several of them a day. In fact I'm in a myoclonic cycle right now, every couple of minutes, for about the last 45 minutes. The ER doctor told me to just take an extra Valium when that happens.
Anyway, getting to RainbowBrite - I'm glad you were able to get thing moving & start getting some help. So sorry you are having so much trouble with your mom. She is really in denial. Has she ever been with you at a doctor's visit? It doesn't sound like it or else she wouldn't be treating you this way. What ever happened to motherly love? I wish there was a way to make her wake up & face the facts, but if she refuses to take you to your doctor or listen to their reports, there isn't much that can be done. Keep hanging in there. I hope the increase in meds helps you.
Shelia