I was still trying to put into words and process my most recent neurology appointment. I went in for pain, swelling, and numbness under my eye, which I had been experiencing for a month. I had tried antibiotics and steroids and had a CT scan of my head and x-rays of my teeth. I went into this appointment with a different neurologist than I usually see, and he looked at me and said, “I’m not sure it’s FSHD. I don’t see it in your face.”
I was shocked. Not only was I diagnosed at 12 with genetic testing, but to have this doctor question me, I was almost speechless. Then he looked in my eyes with a light, had me stick my tongue out, and asked a few questions before dismissing me and the reason I was there as “not something serious” and to come back in two months. I asked him if I should take so many pain relievers, and he said no, you don’t need to. So he would rather me be in pain?
When I got home, I immediately canceled my next appointment, messages my doctor who wrote the referral asking for another referral to a different neurologist, and I began to write a letter about how much of a disappointment that appointment was for me.
Has anyone ever dismissed your diagnosis?
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