hi all, ive just been to see my consultant who the past few times has made me feel like im making my syptoms up. After 8 years of being ill with various symptoms and a very early diagnosis of m.e/cfs (after 2 weeks) my new gp sent me to a neurologist after learning my brother had been diagnosed with ms.
he theought i should get a thorough check out. I had an mri of the brain 18 months ago which the radiographer said there were multiple lesions of high signal . they were non specific but dyemylination should be considered high on the list of diagnosis. I then had a negative lumbar puncture so was dismissed as not having ms,
8 months later i lpartially lost the vision in my left eye for 6 weeks so was recently sent for an evoked potential analysis which has come back with abnormalities in the visual pathway of the left eye.
my consultant is now saying that the lesions are the same shape and in the areas that m,s would show and obviously the epa points towards ms but beacuse my symptoms are not typical of ms ( which he hasnt actually asked me fully what they are) he needs more evidence. so i suggested another brain scan and possibly a spinal scan to which he replied what a good idea!
all the way through he kept saying probable ms probable ms, its all kid of a blur really. is probable ms a diagnosis?
he sent off 5 vials of blood to test for other rare genetic stuff.
My symptoms are getting progressively worse with not much remittance, to be honest i dont remember what its like to feel normal. I feel like im wearing a lead suit and vibrating conatantly amongst other stuff.
sorry for the long rant but i just dont know how to feel x
I think most of the people here feel exactly as you do. I was diagnosed with C.I.S only 8 weeks ago and it wasn’t until I read my discharge notes that I even thought or new that I had symptoms consistent with MS. I went into hospital thinking I had a pinched nerve in my back as my right leg was paralysed and I was dragging my foot along the floor… and came out after 3 x courses of IV steroids with CIS (possible MS)
8 years is a hellava long time to be in ‘limbo-land’ I’m finding 8 weeks bad enough. I have a Neuro appointment next Monday and although I’m not holding out for a definite dx - even though since leaving hospital I have had a whole host of other symptoms ( some maybe related to MS, some may be just my age ) I just want answers as to why I’m quivering like a jelly from inside and why my tongue feels ‘fizzy’ & numb… if he says it’s C.I.S I will say fine and go along my merry way, until something more apparent happens.
It’s difficult to forget about it though isn’t it? When you know there is something wrong, but no one can say for sure why. My own advice would be don’t google symptoms - I’ve resisted so far, and go along to your next MRI with no preconceived ideas about what you have or don’t have.
My first response to what you’ve said is to ask if this neuro is an MS specialist?
As to “probable MS” - yes, it is a proper diagnosis (it basically means 3/4 of the way to meeting the diagnostic criteria for MS), but I don’t think that the neuro was diagnosing you. Instead, it sounds like he was considering if you probably had MS.
It will hopefully become clear when you get the follow up letter from him though!
Fingers crossed that the new MRI will sort things out once and for all.