Totally Confused by MS Specialist! MS or Not MS??

New diagnosis and before diagnosis
1

Hi all,

Am today completely confused! After being told verbally by Neuro in October “You have MS” he referred me on to our MS Centre for the Newly Diagnosed clinic to see THE MS Specialist.

Had that appt today - and he is now saying still not 100% certain of MS … as have demyelination only on spinal cord and clinical exam today showed no lingering effects from big relapse in July…although I still have burning leg, staggering balance that comes and goes and inconsistent bladder etc.

Said it still could be one of 3 other rare neuro condistions causing demyelination and has ordered Anti MOG bloods plus repeat brain/spine MRI.

So now I don’t know if I have it or not!!! Anti MOG seems confusing - has anyone else encountered similar??

Said I will be seen again in 4 months unless MRI’s and bloods throw up anything new.

Not Lyme disease, but he said not typical of MS either… ???

Confused.com :confused:

Minnie

2

hi minnie

no wonder you’re confused.

i just googled Anti MOG and it seems that very little is known about it.

now i’m confused too.

be well. xx

3

Hi Minnie

Me too. Confused that is.

I suspect it’s going to be a case of waiting for the results of the anti-MOG blood plus MRI. Then seeing the neurologist and trying to get a diagnosis pinned down. If that’s possible then.

Oh I do feel for you, one day you’re diagnosed with MS, the next day the rug gets pulled from under you.

Sadly, I don’t think you’re likely to get an explanation of the whole MOG thing on here. Unless someone actually knows! Please?

Sue