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SPINAL MYOCLONUS AND KEPPRA

Jul 15, 2010 - 1 comments

Visited my new neuro yesterday, very helpful chap he was too. He thinks I have benign myoclonus which is good at least it looks like things won't get worse than they already are.
He confirmed spinal myoclonus and tremors in both legs, he has decided to take me off clonazepam and try Keppra so I will be interested to know anyones experiences with Keppra, I shall be weaning off clonazepam slowly whilst starting with Keppra, I feel like a Zombie most days with clonazepam so I am hoping Keppra won't be as sedating.
I am to have an EEG, I had one a couple of years ago but I wasn't jerking alot so he has told me to have a new one and as my jerks can be triggered by noise and touch (they also come for no reason whatsoever) he has told me to get the jerks going while having EEG.
Seeing him again in 4 months time by then he should have my notes from my old neuro... who by the way is an obnoxious son of a b, I am so glad I don't have to see him again.


Laugh I nearly cried

Jul 02, 2010 - 0 comments

Went to physio yesterday who told me to lie on my back and do an exercise, I laid down and started jerking and jumping, did exercise IN PAIN told physio I thought this was making the pain worse she said "Do exercise for 2 weeks and come back and see me" DID SHE NOT HEAR ME, DID SHE NOT SEE ME JUMPING OFF THE BED IN SPASMS !!!
Went to see rheumy and told her about this, said I was not happy she told me to cancel physio appointment. Finally someone who listens to what I say.
Got to admit I came home and cried, I'm getting to the point where I think the NHS is a waste of space.
I'm seeing new neuro on 14th July hopefully he will be more helpful than last one.
Trying to stay upbeat but struggling at moment.
Suz

sleep disorder test - Hilarious

Apr 18, 2010 - 0 comments

Hi All
I underwent a night of fun on Friday, I had tube up my nose, 1 monitor round my belly, one round my chest, one round my hips, 3 sensors two on my calves and one on my tummy...
Woke up at 3.30 to find all the wiring had hog tied my legs, laugh I nearly fell out of bed.
Just what the doctor ordered a good laugh is the best medicine.
Suzanne

MY NEUROLOGIST SACKED ME AS HIS PATIENT

Mar 23, 2010 - 11 comments

I WAITED PATIENTLY FOR TESTS TO BE ARRANGED BY MY NEUROLOGIST SO PATIENT WAS I THAT 5 MONTHS WENT BY BEFORE I MADE A COMPLAINT ABOUT THE WAIT... TURNS OUT MY NEUROLOGIST HADN'T ARRANGED ANY OF THE TREATMENTS HE HAD TOLD ME HE WOULD!  I GOT A LETTER ON 4TH MARCH TO SAY APPOINTMENTS HAD BEEN MADE FOR ME TO GO FOR LUMBAR PUNCTURE AND BLOOD TESTS (THESE SHOULD HAVE BEEN DONE LAST SEPTEMBER AFTER MY APPOINTMENT WITH NEURO THEY ACTUALLY GOT DONE IN MARCH). RECEIVED PHONE CALL FROM NEURO HE WAS RUDE AND OBSTRUCTIVE (ALWAYS FOUND HIM PLEASANT AT MY APPOINTMENTS) BUT WHEN HE SPOKE TO ME THIS MONDAY HE WOULDN'T GIVE ME LP RESULTS...SAID HE DID NOT HAVE MY NOTES, HE WOULD NOT ANSWER QUERIES I HAD RE: TESTS AND OTHER APPOINTMENTS HE WAS ARRANGING AND HIS PARTING WORDS WERE 'I SUGGEST YOU GET ANOTHER REFERRAL- GOODBYE'. ANGRY IS NOT THE WAY TO DESCRIBE HOW I'M FEELING. DO YOU THINK HE KNEW I HAD PUT A COMPLAINT IN ABOUT HIM AND THE DELAY I HAD EXPERIENCED AND HE RANG LOOKING FOR A FIGHT? I THINK SO. I SAW MY GP TODAY AND TOLD HIM ALL THIS, HE KNOWS OF A MOVEMENT DISORDERS NEURO AT ANOTHER HOSPITAL AND HAS REFERED ME TO HIM , HE SAID OTHER NEURO MAYBE DID ME A FAVOUR THIS CHAP IS VERY INTERESTED IN MYOCLONUS SO MAYBE NOW I WILL GET SOME ANSWERS!