New neurologist

[Guest guest]

I'm just back from seeing my new neurologist - he is a neuro-ophthalmologist,

and the specialist that my first neurologist was consulting while I was in

hospital ... He is *wonderful* - a modest softly spoken man, highly intelligent,

explained things well, and was generally brilliant. I've now " appointed " him to

my medical team, instead of my first neurologist (who is more of a Parkinsons'

specialist).

He is quite convinced that I *do* have neurosarcoid ... he says the region of my

brain that was affected (optic chiasm) is very typical for NS, and that all the

other signs and symptoms really point in this direction too. He doesn't think I

need a cerebral angiogram. He says that while I may not get a definitive tissue

diagnosis, it doesn't really matter as it won't affect treatment.

He wants me to stay on my current pred dose (I'm down to 40 mg, tapering down

slowly from 60), until we see if the remaining vision loss and blurry vision

gets better, it's worth continuing to hammer it. He's also prepared me for the

fact that there may be permanent scarring and I may not regain this last bit of

vision (which would be a bummer, as it's my central vision and impacts on

reading still).

He said that it could be good to go onto Imuran and cyclophosphamide as they are

" steroid sparing " - when you take them with steroids, they lower the amount of

steroids you need.

So feeling happier, especially in hoping that vasculitis is less likely in his

eyes anyway ....

Cheers,

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