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.

ditto you have alot of same symptoms as me
 

hi I am tonijo and it is something to know I am not alone now I am trying to deal with back it so painfull . what do you do how dose your doc help you?and also tail bone kills me but mri says all is good I dont get it

I forgot to say
 

your symptoms seam to start the same as mine and to hear this all so familuar see I also have balance problems and drop things but I wanted to ask can you feel the muscles in your back I can some more painfull then others but some right on spine tonijo