I have a rare condition. Anyone else have it or heard of it? PIOG
Yes I posted the same thing in 2 different groups but deleted it. No one was answering and I assume it is because of the big words and the lack of drama. I am going to try to look up the meanings to the words I think people may not know and provide links.
I was diagnosed with febrile seizures as a baby but then they said I had something called Dravet Syndrome when I got to be around 3 or 4. As time progressed and I got older they discovered that it wasn't Dravet Syndrome. It seemed to fall on the Spectrum of Progressive Myoclonic Epilepsy (like Dravet Syndrome) although it does not fit into the mold of just one disorder. I can walk, talk and I have had all my motor skills (except sometimes I studder and forget what I am going to say. My hand-eye coordination kind of sucks as well). I have myoclonic seizures that include not just a twitch or two but loss of use of that body part for anywhere from 3-20 minutes due to violent spasms and twitches. I also have at least one tonic-clonic seizure a month. It could me more or less. Most of the time its more. I have been to at least 15 different doctors throughout my life and I have been on almost all the drugs they have out there. You name it, I have been on it and it probably doesn't work for me anymore. I had a seizure on Tuesday that landed me in the hospital and I was told that it is only going to get worse from here on in (I already knew that, but thanks for raining on my parade, doc). Most people with a PME disorder don't live very long. I think there is one condidtion where people don't even live into their 20's. Unless they have something like "Baltic Myoclonus" (I think that might not be the name of it so that is what the quotes are for) which I have been told I do not have, although what ever I have is more closely related to that than anything else. In recent years I have been noticing my problems have been getting worse. I went from being the little girl that skipped 3 grades because she was so smart to the woman who can barely form a sentence sometimes. I know what I want to say but I can't get the words out. It is interfering with work and life. My neurologist wants to change my meds (again). This time upping the dose on one and changing the other one completely. Not because of the problem with speech but because I have been having more frequent seizures of both types. It is becoming very hard to function in society with this disorder. I will walk down the street and fall because my legs began to twitch.
I didn't add this before but as of now I am homebound until my neurologist tells me otherwise. No work, no driving, no nothing. I can't do anything. I can play with my dogs and go on the internet (but I can't watch videos)
The condition I have is very rare and I doubt anyone here has it or has even heard of it. But I see no harm in asking if anyone knows anyone with any of the PME disorders.