Hi, I am also new to all this but have been on this site reading lots ... I had optic neuritis back in June lasting about 10-12 weeks but in that time I have been given mri brain cervical spine and thoracic spine visual evoked potentials nerve conduction tests and blood work up. Up until 8 weeks ago I was running 8 miles 3 x week and now I cant run at all due to pins and needles burning pain in my legs feet and hands. I can no longer put my feet in bath water because it feels like its scalding them, i get severe cramp in my feet where my toes go in positions where I didnt think possible! My neurologist has been wonderful throughout and although he hasnt diagnosed ms he is concerned that demylenation may be the cause and has started me on gabapentin for the pain and has now ordered evoked potentials and sensory nerve conduction tests along with possible LP. My thorasic mri showed some 'inflammation' and I had slightly raised inflammatory markers. Although of course I am worried I do feel incredibly well looked after and after reading some of your posts I felt compelled to write and to encourage all of you who dont have such a great consultant is to keep badgering them till you get the investigations you deserve xx
Hello, and welcome to the site
It's amazing the difference a good neuro can make. I hope yours can get to the bottom of your problems and maybe even get you running again :-)
I`ve seen around 13 different neuros...i thought that some were good, some less good...then the experience of the last 2 made me give up on chasing a definite dx....I`ve feel I`ve been treated cruelly.
But I am so glad you have found a good `un.
Give us his number, eh? LOL!
Hi, yes there are good neuro's out there and you are lucky to get tests so quickly. I was admitted to a general medical ward and told they thought I had demylenation. I was discharged, told to contact social services as I could hardly walk and had lost vision.
I was off work for months, took 4 months for portable MRI of brain only and 5 months to see a neuro. It took another 18 months to get VEP's and a LP and that was only because I was admitted into hospital again.
Three years later somatosensory evoked potentials.
I was with an MS specialist and my condition had progressed. He wanted another MRI as he said we are now talking about life threatening treatment. Two appointments went by, still no MRI scan. After a year he picked the phone up in my appointment and played hell with the radiography department. I finally got the scan after a 15 months wait.
Despite having upper motor neuron signs and symptoms it took 11 years for someone to suggest a full spinal MRI.
I now have little vision left in my left eye due to optic atrophy. my last VEP's were in 2001.I now use a wheelchair and was suppose to get motor evoked potentials in 2009 and heard nothing for a year. My neuro said she didn't know why I hadn't had them and didn't offer to chase it up.
I then found out from another neuro the neurophysiologist was off sick. I was referred to another neuro so still haven't had the motor evoked potentials.
I'm now with a team of Dr's who said they would get me as near to a diagnosis as possible. I haven't heard or had anything done for 7 months. Once again I'm going to have to chase things up.
I'm pleased in some areas tests are forthcoming and neuro's on the ball, that's how it should be. There are some of us who seem to find ourselves at the bottom of the dung heap. It does make you think you are not worthy.