Hi All
My GP suggested I may have 2 things going on, I had a spine op last year as I had compressed spinal cord- cervical mylopathy ( with a very large white spot and possible others in spinal column) could not move as in agony with compressed nerves so I now have new discs, fused vertebrae and a cage, discharged with lots of other symtoms- mainly fatique, brain fog, confusion, speech,arm and leg spasms, leg problems, neuro pain etc… my surgeon said “old age” so my GP referred me to a Neurologist. I did have a period of about 3-6 mths a few years ago with alot of these symtoms before an op but thought it was the drugs however my GP suggested my issue then may have been masking my symptoms.
I posted quite a while ago, any advice would be great as I find now I am having to do my own research. My neuro told me all would be become clear after my MRI… so he was convinced something, he wouldn’t say what would show… it didn’t, I wasn’t impressed with the very basic report that came through as the person who did my scan stopped it part way through to ask if I had anything in the back of my head or a significant injury/accident to the back of my head?, I have a copy of the scan and a few of the pics show a missing area?? nothing mentioned on the report!, I asked for a 2nd opinion but the neuro said all looks fine, I also have lots of black dots which look like some ones dotted the scan pics with a fine marker? but no lesions… anyway my husband jumped up and down with joy as it was “Clear”,
My neuro looked puzzled put me on Lyrica and sent me on my way for 3 mths, Lyrica helped with arm/neck pain but no improvement on the other symptoms which have increased, went back after 3 mths with increased symtoms so my dose was increased and my Neuro sent me for bloods and will have another emg test in a couple of weeks,now have problems with walking, clumsiness, cramping, leg gives way, bladder etc…
He explained after I had kept a diary that he was looking for MS but brain scan did not show it, he said if nothing becomes apparent he may have to give me a diagnosis of ME/fibro but he doesnt want to, because he doesn’t know what’s wrong and he considers ME for me as a diagnosis that he would put my under until something else shows?
I have not seen him since but have more symptoms whilst waiting to see him in a few weeks problems, eyes ( not optical neuro neuritis) but double vision and problems focusing the optician stated that if it changes that quickly again he would have to refer to the eye hospital, my eyes have changed dramatically in 7 mths!!, and now pulsatile tinnitus, weirdly also my shins are swollen ??? No where else on my legs just swelling along my shin bones where I can press and it leaves dints has anyone had anything like this???
I now think I have to research both MS & ME and see what symptoms match with what condition, I am convinced it is MS however I suppose I will have to wait, I don’t want it to be either but I think you know when something is wrong. Also I don’t have the time to research for hours on end but I don’t think I have a choice.
The bloods will probably be normal!, I know the EMG will come back with something as my previous one after my surgery showed ulnar nerve problems and I was offered carpal tunnel ops for both hands ( I refused for now), these symptoms I can cope with given the correct meds it is just everything else I am really struggling with, 3 kids work and family life.
Any advice for my next appt I am off to my GP today as I think I need him to record all these other symptoms.