Haven’t posted for a while as have had lots going on at home with kids etc…but have been reading. Not sure I have anything useful to offer at the moment as I thought I had MS, now again not sure…so don’t want to assume that I have a place here!
Following verbal diagnosis of MS by one Neuro Professor in October, I was passed to MS Specialist Centre and there began the confusion!!
MS Specialist kind of ‘suspended’ my diagnosis and said he wanted to rule out some more things. He ordered Anti MOG and Aquaporin 4 blood tests and repeat Brain/Spine MRI with contrast.
First MRI done in July after apparent ‘relapse’ led to hospital admission.
2 lesions found on spinal cord, one enhancing (active?) one older. Lumbar Puncture revealed Oligoconal Bands present in CSF only.
Symptoms improved following 3 day IV steroids.
Repeat MRI done 3 weeks ago shows no new lesions or activity - which I guess is good Tests for Anti MOG and Aquaporin antibodies are both negative (As far as I can work out, a POSITIVE in these supports a diagnosis of Neuro Myelitis Optica, ADEM or possibly Transverse Myelitis.
So to summarise - 2 spinal cord lesions of different ages; A number of distinct periods of different symptoms in different parts of body over 20+ years; Positive for O Bands in CSF; negative for Lyme Disease, B12, Anti Mog and Aqua 4 negative.
And still only a letter now saying " I would not recommend any specific meds at this time but will review you in clinic in due course"
Symptoms fairly stable since summer hospitalisation, as in same parts of body but more noticeable and some days pretty troublesome. More than I would expect considering no new activity
So what on earth do I expect at next appt???
Will I be discharged, or ‘watch & wait’?? Or will I be diagnosed with something?? Could it be SPMS given that symptoms are intensifying but no new activity on scans?? That is my main concern.
I really am down today. I know the letter is GOOD as in no evidence of disease activity, but I feel worse than I did in the summer, with now apparently no confirmed reason why, therefore no treatment options
Anyone have any thoughts?? Bing a cynic it did cross my mind that Neuro at MS centre has to wait for new financial year before he can confirm any more new MS’ers !!! - being flippant there