Scared and don't know whats next


I have recently for the first time not been able to open a door with my arms. I am scared I don’t know what is next and I don’t know how I am going to be capable of anything. Considering I am on Mestinon and Prednisone and feel absolutely no relief. Nobody I know has heard of this and am too weak most of the time to even pick up my daughter. I just don’t know what to do with my job? When I need my arms to lift my eyes and my arms are too tired to be brought up to my head. My job consists of preparing reports and all other computer work…How do people make this work to live a “near normal life” if the meds provide little relief? I don’t understand this, I am scared of this and don’t know what I need or what to do? Please HELP me.



Hi, Mel,

I am sorry that you are having the difficulties that you are having. Please do call your doctor. He may have other ideas as to what to do. Keep in touch. Oh, and here’s hug too (((((Mel))))).

Take care,

Alexis :slight_smile:



Hello, Mel…

Call your neurologist and tell them what the status of your MG is now. Sounds like you “might” need a dose adjustment/other treatment.

Did your doc perform the Tensilon test on you? Are you sero-positive or sero-negative (I’m in the 20% who are sero-neg.). How about your EMG…how’d that turn out?

Does your neuro specialize in MG?

I hope you get this message soon and are able to get some relief, Mel.

Keep us posted. Sending some good karma your way!




I have been waiting to see how your tests turned out. You need to find a new neurologist if this one provides not relief to you. Did they say any more about Mayo Clinic? Maybe we should go together. My appt is August 9th with Dr. Brian Crum. I am looking forward to some help with this disease that know one seems to know about. Canyou take short term medical leave and still keep your job? If this continues, can you apply for short term disability? Keep me posted.

Love and prayers for you and your family.
Leeann (house)



Hi Mel,

There are so many different types and combinations of treatments. Please get in touch with your neuro and/or let us know how you’re doing. I’ve been where you’re at but it can get better.