Hi all, new to the forum had a nosey at some of the threads and although some covered some of my issue (diagnosis) none totally so thought Id ask if anyone out there has been in similar situation. I was told severa years ago doctors thought I had ms after my whole body gradually went stiff especially legs. Couldn’t even walk. Lumber puncture normal. Brain scan had lesions, was admitted to local neurological ward told I was to gey steroids. After waiting all day a specialist came spoke to me for less than a minute then said I had me with cervical spondylitis NOT M.S doc said not enough Lesions for diagnosis. almost 11 years later I have been told I have fybromyalgia, cervical spondylitis and M.E! I have to manage every minute of every day just to have a life. I have all key symptoms of ms brain fog, swallowing speach isues walkibg difficulties fatigue, even get the shock thing up back of head parts of my body mainly legs hands arms get tingly stiff stop working, urinary urgency bla bla. All my plates and cups are plastc now. Im like elderly woman most days cant even do buttons or pick up coin from floor but Im only 46. If I do too much walking (which isnt very far) my legs seize and just stop working. Its predictable yet unpredictable! Some symptoms are similar in ms and cervical spondylitis as both can influence nervous system. So I get the confusion but because they can see spinal damage they put main similar symptoms down to that and just seem to ignore others or send me for more tests for other things that come back negative. surgeon has said visible damage doesnt reflect severity of symptoms but is now asking me to choose if I want operation on spine just in case it can help. My dad had tjis op and it didnt help him and although Im desperate to feel normal I dont thi k it will help me. I have good and bad days with everything pain mobility etc. But more bad than good last few years and just desperate to live as normal as possible again. Iknow I have some damage to top of spine, but take key symptoms away from that and I still come out with ms not me I can never seem to relate to people with me but deffo with ms. Should I try the op or push again for ms diagnosis so that I can get appropriate treatment. Thanks in advance and tried to keep short x
Hi ki mike I can understand your position I was diagnosed wih S.L.E. After lots of tests back in 2002 put on the usual meds inch never really made much difference may 2013 I started having bad headaches falling and feeling awful got admitted to hospital with suspected aneurysm after several scans consultant came and said I had several lesions old and new on c spine and he wanted to do a lumber puncture then he put me on a anti epileptic before saying he thought I had ms and refer me to neurology
Neurology sent me for more scans sent me to eye clinic to look at double vision etc then in July they called me in for three day course off steroids
On second day neurologist came and said he had invited my reumitoligist who looks or looked after my lupus to come and see me and discus my problems
She came and she examined me had me walking up and down etc then she told me I had cervical spondylitis not ms the following day after steroids neuro came and took me to his office where he showed me he scans and test results and said they had ruled everything else out and that I had ms ppms
He told me to stop work immediately and to try and build up my core strength etc
I still see the feumatoligist because I also have sle she still pushes the cs it’s not the best position to be in but just try to make the best of it
Try and get a second opinion fare quick