Ever feel like a lab rat? Let someone diagnose you with a rare genetic disorder and then try to find a doctor that is not afraid to treat you!

I have two neurologist arguing over who is supposed to do what. A third stated it was exciting to have someone like me in the office and then proceeded to tell me how lucky I was to be under his care because he is so good!

And yet, here I sit. I’ve been trying, since last Thursday, to reach a doctor to discuss some changes I am experiencing.

I’m in pain, my speech is slurring, at times,  to the point of not being able to understand a thing I say and can’t manage to find someone in this doctor’s office that can read a message correctly or it could be the message taker.

Every referral source I checked said I am seeing the doctor’s I need to see. I see them about every four months, but if you need anything in between those visits, FORGET IT! The “premier specialist” dealing with my problem is located in Cleveland, Ohio. Long ride, even every four months.

Forgive my poor pitiful me moment, please! I’m just a smidge agitated at the moment. I feel so bad and cannot get any relief. Maybe I’ll fly to Cleveland over night and surprise that specialist first thing in the morning. Have a great day, everyone!