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Baby had an appointment at Alder Hey yesterday and they are asking one of the hospitals in Newcastle to test a specific group of genes concentrating on the chemicals released from the nerve ending to the muscle. They have said the group of conditions is called congenital myesthenia. I have heard of Myasthenia Gravis but they said this is the more common version of the condition and they don't think this fits with our symptoms.

It is quite frustrating as Paul is now 2 and we still don't have a specific diagnosis (and I'm 30 something and I have it too and my neurologist still hasn't found out either)

anyone else's little one got a similar condition?

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