Well I’ve just got back and the appointment was both illuminating and frustrating!
I told him briefly what’s been happening, pointing out the main bits that worry me.
He had no answer for the brain freeze thing, or the disorientation when in water… or dizziness full stop really!
He told me my eyes are probably more to do with migraines, but people with migraines don’t have problems with their legs like I have, so my legs must be something else. Or bladder problems.
He also mentioned a lot, but not all, of my symptoms fit in with my original 2008 dx of ME/CFS, he did add on that he knew I wasn’t convinced of this diagnosis!! Which I am not.
He said MS, although possible, in his opinion is still unlikely (same as he said last year) As although I do have a lot of symptoms, they are the same symptoms, (albeit symptoms which are worsening) but not new ones. He did however keep mentioning my legs. I asked if he noticed any difference in my legs from last year, he said they were weaker but the difference was only marginal! (They don’t feel marginal!! :shock: )
I don’t really know what they are looking for in the exam, but I struggled pushing my legs up against his hand. Also last year the foot thingy they do to see which way your toes go, last year my toes went down. Today my big toes moved upwards, not much mind, but they still went up. And as he was hitting me with the hammer thing, my legs were jumping every where! Not sure if they’re supposed to do that!
Final outcome he said he wants to do a VEP and LP, but he doesn’t need another scan as I had one last year which was clear. I asked why, as it WAS 12 months ago… so he said well I suppose we can do a scan of your spine as we don’t have that just make the full set. So he let me go with some more blood test and told me I’d hear from him in about a month for my appointments.
As I was handing my papers in to the desk to organise my other appointments I noticed a few things he’d written…
Exam: Evidence of demyelination ?MS
then he wrote: Possible MS but MRI NAD
So he told me to my face he though MS unlikely, but then wrote on my notes ‘possible MS and evidence of demyelination’ !!!