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Originally Posted by NeuroNixed Craig
Long story short guys. I've had diagnosed, undiagnosed, misdiagnosed diseases and conditions since symptom onset in 2000. MS, SPMS, Hereditary Spastic Paraplegia. December '08 a near fatal brain stem stroke saved by the clot buster drug, residual effects there after. I was doing really well, considering my situation, until late October '09. Very spontaneous, overt, involuntary movements primarily from the abdomen up.
No rhyme or reason for the dramatic gestures including severe head and neck distortions, facial grimacing, lip chewing, arms all over the place, distorted contorted hand and finger movements. If it wasn't me and I was watching me I would say it's all pretty darned amusing to see.
It's so bad when in meetings at church they don't know if I'm spazing or actually trying to be recognized with a question to ask. The movements are exacerbated by over stimulation such as in a busy store or watching an action packed movie. Exhaustion is ever present since it is like working out 24 hours a day. The only relief comes from taking strong doses of Clorazepam to knock me out for short periods so my body can recover.
A neurological specialist confirmed I had some type of "event" in late October and further diagnosed, Spinocerebellar Atrophy and Ataxia, Cerebellar Degenerative Disease as the main culprits. My prognosis is terminal. No big surprise there and the straight forward honesty on his part very refreshing.
Needless to say, I have no physical routine at all due to the irregular sleep-wake patterns, exhaustion after minimal exertion, use a power wheelchair in the home and power scooter when I occasionally go out.
Now, I must sincerely apologize as I can't remember why I even started this post. Take from it what you may, comment and share your thoughts, all are appreciated.
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Hey Craig - Like Music Girl, I have seizures in my frontal lobes that radiate throughout my entire brain in an encephalitis form that greatly affects the autonomic system-meaning I can drop dead at any second from one of these seizures as the autonomic system affects the heart and lungs. Lungs have gone into paralysis on 4 occasions. Neuros from NYU put me in Dilantin as they said it was the ONLY drug (not even generic-phenytoin can affect this area of the brain. However, drug has caused increased skull thickening and so another neuro has started me on Keppra(frontal lobe seizures) and my involuntary breathing gasps have literally stopped. These involuntary attacks (like a gross hiccup) would crush my rib cage down toward spine and then a huge gasping breath occurs as if I were drowning and just coming up for air. Way weird. Painful tooo. One doc said it looked like a form of Tourettes but I was lucky-when I asked why I was lucky, he replied, "Cuz it doesn't seem to cause you to cuss out loud. Haha-I told him I was really close to swearing and it could happen at any moment! But, keppra has stopped this disorder symptom completely ! Huge relief. Also, Neuros told me I was to live in a bubble atmosphere as ANY emotional stress could cause an overload reaction from the autonomic area. Even happy stress-like getting excitedly happy about going to Hobby Lobby for after Xmas sales! That little reaction sent me to hospital last year with a major heart attack!! Im not even allowed to watch any tv esp like the type of movies you really like-from your list-simple shows with no stress - i guess game shows mostly. I was supposed to have only been able to exist for a few months- Ive made it for 4 years-when SRS called NYU docs they were shocked to hear that I was still alive-haha. So my favorite saying last 4 years as I leave stressful situations or people is "I'm sorry-Im under strict doctor orders to ONLY do Happy!" So far its worked! Keppra has been a life savior as far as those involuntary chest, breathing gasping attacks went. Maybe a drug of choice for you too? I know how it feels when out in public-one "professional" woman just kept screaming "ohmygod" over and over when I was under one of the attacks but when it was over I told her in no uncertain terms how pathetic and stressful that was for me to have her so completely out of control. Funny now.