Lab-rat Syndrome

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,Β  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!

8 thoughts on “Lab-rat Syndrome

  1. Oh, No! That is so wrong! Maybe a scare on their part would be for you to tell them to call you back in ER! Too bad they don’t schedule telephone appointments. Not me…but…we are POA for an elderly uncle and his ortho guy in Chicago used to answer our emails. Of course, I had to hunt for his email, but once I found it, I used it and the man answered all of our questions via email. My own regular doctor has started using email & she & I are both loving that she does.
    …Enough about me…Good luck – keep at them!

  2. Don’t you just love neurologists? πŸ˜• Mine told me that others are so unlucky that they throughout their lifetime without seeing my condition. How can you tell a patient such a thing?
    And it’s so true that you can never get anything from them except when you’re at an appointment with them. I’ve only had one that would call me back and she’d even do it on the same day. Unfortunately she passed me into someone else because I was too “complicated” for her to deal with

    • That is exactly where I’m at. Started calling last week. I’m getting to the ER stage. Maybe I’ll get some help that way!

      Thanks for listening! I hate to sound like a crybaby…….Jill

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