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.

You have a lot going on, yet seem to be keeping in good spirits.
I know when movement disorders present in public it can be embarrasing.
I hope you have a great day today.

Thanks for sharing, guess I should be happy that I only have a jerky leg. God Bless you and again thanks I'm sitting on a pity pot right now and need to get off it.

Craig, not sure if you remember me from years ago. I still have an MS diagnosis, but have been to having involuntary movements too. I have them in both feet, and right leg. I think it is also occurring in my lower face.

I've been taking Mirapex for it, but doesn't seem to stop it all together. Stressful situations seem to make it worse.

You have been down a long road. I hope you find something which helps.

Jalee

Dear Crabby,

I hope your day is going better!

I noticed that you had some neck, spinal issues. Do you think that might have brought this on?

I have been diagnosed with progressive multifocal myoclonus, know i am starting to have tremmors.
They told me in 2006 I had ms after my spinal tap they said no ms, and i had perefrial neuropathy.
it it frustrating! I have been to Michigan, Florida, Indianapolis and Minnesota.
My last EEG said irritative epileptic episodes in the frontal lobe
they want me to go back to IU Med Center. I had a bad experience. so I am not thrilled about going.
my Neuro dr put me on Keppa it has helped quite a bit, you might look into it.
ByE
C

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.

Craig, if you are taking an antidepressant in the SSRI family, or SNRI like Cymbalta, this can cause movements like that. They start with the neck, mouth, jaw, and may include the arms.

It has to do with elevated serotonin levels, which cause or depress dopamine in the brain. These movements may occur after a person has been on the drug a long time, more than 6mos. I'd look at any and all medications you are taking now. Some drugs deplete nutrients, like magnesium, or B12 or Vit D and calcium. If you like you can PM me with what you are taking now, and I'll look that up for you privately.

They originally suspected the fact I had been on a high dose of Reglan from 1992 through 2006 when my "new" then PCP immediately took me off of it. Then in 2009 FDA came out against Reglan people for falsifying their clinical s and their is a continuing class action suite against them for Tardive Dyskensia.

The problem is when I was taken off of the drug the symptoms had not exhibited. Only after this cerebellar event did they appear and not abated but progressed. I only take 10mg of Paxil once a day and that's it.

Thanks for pointing out about the SSRI linkage.

Craig, here is an interesting article about movement disorders and SSRIs...

Paxil is discussed below, on it so scroll down some.

http://www.personalconsult.com/articles/ssricme1.html

Given that SSRIs have now been exposed as not really useful much for depression at all, it might be a good idea to discuss the Paxil with your doctor and deterimine if it is even doing anything USEFUL for you now. Tapering off is the way to do it, please don't let him have you go "cold turkey" if you both decide to stop it.

Paxil comes in a liquid, to help with a taper off. If you Google "Paxil liquid taper" you can find schedules for it.

Paxil over the years has proven to be a nasty SSRI....the tapers some use are quite long, as it is difficult to stop this medication. There are several websites and forums out there devoted to dealing with this drug. So I really do think it could be a part of your recent problems.

Doctors don't often know every single thing about the drugs they use, and for patients with complex neuro problems some solutions may be ignored and attributed to the disorder, when in reality a drug was the culprit.

Take care.

I have Fahr's disease andI know of only one other person who does not have dementia.