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Old 11-15-2010, 12:02 AM
music girl music girl is offline
Junior Member
 
Join Date: Oct 2010
Location: Northern Midwest
Posts: 17
10 yr Member
music girl music girl is offline
Junior Member
 
Join Date: Oct 2010
Location: Northern Midwest
Posts: 17
10 yr Member
Confused progressive multifocal myoclonus-diagnosis

Has anyone been diagnosed with Progressive multifocal myoclonus?
i have also been told that i have tremmors in my hands.
blephorospasms in my eyes.

this has been a very frustrating since 2005. i am open to any insight that anyone might have.

my jerking started in 2005 in my right leg while at rest. it has since moved to the rest of my body.

i have been told in the past that i have ms, most recently cjd now they are saying what i have is very rare and i do not have cjd.

i recently had an eeg and they said it appeared to be epileptic in nature in the frontal lobe, however i do not have seizures.

they put me on keppra the maximum dose this has been a miracle medication however i still have some symptoms so they added lamictal.
i do not know if i am getting worse again or if the lamictal has not been as successfull for me.

they told me if that did not work they want to do a two day eeg test at iu medical center.
yuck! it sounds like one of those where you do not get any sleep.

i have problems with my balance, i drop things, my arms, legs, neck jerk. my spine twists.
heat and physical activity seems to make this worse.

on occation i will ask someone a question and can not remember their answer or perhaps i do not hear their answer for a minute or two.

on occation i will trip over my own feet.

i have aweful fatigue.

i have stabbing muscle pains in my back. which my neurosurgeon says this problem is in the muscles.
i had a spinal fusion in 2003 that went fine, i did have to have 2 pints of someone elses blood due to the fact 2 weeks prior to the surgery i was anemic and could not give my own blood.

2004 i had my tail bone taken out or should i say the end of it due to bone spurs.
that surgery also went fine.

i am looking forward to hearing what insight you might have.
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