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Has anyone else been diagnosed with VHL and Myasthenia Gravis?

_RSH-
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Hi Everyone,

I was diagnosed with VHL when I was 13 years old I'm now 33 years old and have had three hemangioblastomas removed from the cerebellum, two from my spine (c3 & t12) and several in my eye's which have resulted in loss of vision in one eye.

About 10 years ago I was also diagnosed with Myasthenia Gravis as well, my doctors seem to think that this is purely a coincidence and that I have just been unlucky but I think there must be a connection, the problems with the Myasthenia only started after I had my first operation on the cerebellum.

Has anyone got both?

Explore topics in this discussion:

Weakness Graves' disease Myasthenia gravis

2 replies

pupa

What were the complications of the vision loss in one eye? I have a friend who has graves disease and of course no vhl. but he was treated and is fine thank goodness, good luck.

_RSH-

Hi,

I had a tumour in my left eye that caused my retina to detach but that was caused by the VHL.

My Myasenthia Gravis did go into remission after I had my Thymus Gland removed but it's come back again, though luckily it's not as bad as before, mainly just weakness of my arms, legs and a few episodes of mild choking.

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