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[CJ-sleepless]

I do feel better knowing what it is but disappointed it's not something that can be fixed! They are sending me another appt, and any changes I'm to go to A&E!

[countrybumpkin]

I do feel better knowing what it is but disappointed it's not something that can be fixed! They are sending me another appt, and any changes I'm to go to A&E!

so glad you have a definite diagnosis, not something I have ever come across so I have learned something!  I know just how you feel with being told its rare  as I have a habit of being told " it could only be you".