MS or ME

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.

Hi BusyMum

Sounds as though you’re having a time of it!

The key to ME is post-exertional malaise/fatigue which is usually delayed.

So, to give you an example, if you were have a demanding day (whatever that means for you - could be physical/mental/emotional), you will find you are perhaps able to cope (have to energy) to deal with it at the time but will pay for it a day or so later on.

Classic signs are fatigue (not tiredness), weakness, pain, sore throat, aching limbs. I have heard it described as having ‘proper’ flu but without the temperature.

What I have also read recently is that ME and MS share many similarities and ME can present with neurological symptoms too. Like many things, ME/fibro is often a diagnosis of exclusion after everything else has been written off. I guess my advice to you would be to be satisfied that all other options have been explored.

Good luck with your GP today.


sorry, meant (have the energy)!

Thanks Jane

Well appt at GP standard, I think he just wants to see what the Neurologist says, he did say that problems with eyes and ears are nothing to do with any of this? I have read different.

I do know that something will become clear one day!!! but it is the frustration, I am concerned that the Neurologist will discharge me and then what, do I wait until my symptoms get progressively worse? by the time I get re referred it may have levelled out.

I have read some of the other posts and I know it can take years to diagnose certain conditions, I do think looking at the conditions more points to MS than ME but they seem to have excluded this due to clear brain scan, what worries me the most if I have also read that this can happen, my neuro was convinced before my scan. So now I suppose it is just a waiting game and coping with everyday as best I can ( hard work at times when some days I just don’t function at all!!!) at the moment I am trying to deal with it the best I can but feel like I am already a burden to my kids and husband although they don’t see it that way, I have made a decision though, I will not let it stop (whatever it is) from trying to do things.

I have met people in the past with certain conditions and thought really??? but they look so well !, I think I have to apologise to you all because now I understand.

Completely hear you about feeling like a burden but honestly that’s something that our loved ones don’t share. It also sounds as though you’ve got a really positive attitude which is half the battle.

One thing that does spring to mind and it may be worth speaking to your neuro about, is that MS can present with spinal lesions only. If your symptoms continue/worsen it might be worth pushing for this at some point.

Hope you have a nice weekend