• I could use some help with this.  My neuro-muscular specialist is calling Fri Feb 12 to follow up with blood results from muscle and nerve panels he tested.  It will also be my chance to try to get more info about what is going on with me.  I don’t want to ask too many questions and have it appear that I am just an anxious person and am losing my mind.  Is it ok to come right out and ask him:  Do you think I could have a slow progressing form of MND like PMA?  Also,  I would like a very thorough clinical exam but I don’t know how to ask for it.  The last two appointments (for the last year) very minimal reflexes were checked.  He seems to ask what my current main issue is and just focuses on that and overlooks everything else.  That is not what I need.  I am worried he is missing things.  Last time he let his student come into the room first and he wanted to know from the beginning what has happened, but I only got partway through then my Dr. came in and only a check of my left hand and chin/ tongue was done before EMG.

    What I am asking for is help to plan this appointment so that I can get the most out of it.  I am all over the map when talking about symptoms because I have so many things going on and I can’t focus.

    Should I email him a video of my twitching?  Should I ask for and EMG asap?  How do I ask for a good clinical exam.   Should I ask him if he can RULE OUT Als?  Anything else I might have missed feel free to let me know.  I want to have a productive appointment and not feel mad at myself again because I didn’t get answers.  🙁

    Thanks to all of you great supportive people!!

    • Lisa,
      I understand your concerns. My suggestion would be to write down everything you wrote in your post in a bullet form. Break it down into questions and concerns. Let him know a head of time what your questions are if that is possible. I would take a video of your twitching and email that to him also. I took videos of a few similar things and showed it to Dr. Benatar and he found it helpful. Is there someone who can go with you and help advocate for you? I would rehearse what I wanted to say to the doctor and let him know that you need answers and want additional tests. Are you comfortable with any of those suggestions?

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