clonus - please help!!!!!!
Posted , 4 users are following.
Hi anyone that reads this. I am feeling pretty desperate. Just out of hospital after spending 9 days there. Apart from actually finding clonus nobody can give me any answers and I don't know what to do!! My doc sent me cos I visited him in a state, couldn't walk, still can't, my legs shake, my knees keep bending when they shouldn't and I'm just all over the place! I look drunk, people stare, I need a stick at best, wheelchair at times. They did MRI scans and blood tests, apart from periventricular white matter on the brain scan and some slight changes in neck scan and a bulging disc that they say shouldn't be causing any problems and slightly raised copper levels they said they can't find anything wrong and sent me home to go back in a couple of weeks (I think!) for an MRA . The physio was talking like I have a choice about how I'm walking! He kept telling me to just practice, this came on suddenly, it wasn't as though I hadn't walked for ages and then this happened when I tried to again, I was walking every day, even though i had back pain and sciatica (had an injury to spine and pelvis 25 years ago). I am struggling just getting from my bed to the loo. I live in a bungalow so at least I have no stairs to contend with but I feel hopeless and like I have been dismissed -I cant walk!!! I need to know why and whether there is anything that can be done! Please if anyone has any idea what could be causing this or what i can do next I would be very grateful. Thanks in advance x
0 likes, 2 replies
derek76 sandy67
Posted
Are they doing genetic blood tests for any inherited diseases and EMG ( electromyogram) tests?
sandy67 derek76
Posted
Hi Derek thanks for reply. No, no relatives have anything similar. They haven't sais what blood tests they did apart from copper and ck, copper was slightly raised, ck I think was normal. Neuro said she doesn't need to do emg cos she said there is nothing neurological going on. But clonus is neurological isn't it?! She, at least, confirmed that after testing herself, after she had at first rolled her eyes saying "who said you have clonus?" when I told her that it had been found. I said "everyone who has tested it".its still there, I get over ten beats on each foot. At first she just completely dismissed me cos she said MRI scans looked fine, only after she saw the clonus herself did she order ck and say I need an MR angiogram but I don't even know when that will be. I can't stop crying. I really need to get back to work, I have ao many bills to catch up with and a court summons for council tax..i don't know how much more I can take!