I have my initial consult at Mayo in Rochester, MN Tuesday and will be heading there tomorrow. I am surprised with how nervous I feel.
My symptoms began a few years ago with what I thought was arthritis in my hands. I’ve never tested positive for any inflammatory conditions and the pain has spread to most of my body. I have muscle weakness, fatigue, and now when I smile my cheek muscles quiver visibly. I’ve been nervous to think much about it since I have an aunt who died from ALS. I finally saw a neurologist who tested me for one thing only- Myasenthia Gravis (MG). I had never heard of it.
I tested positive and he stated he feels it’s a false positive. Still, he started me on a prescription for it. He also told me the pain I have would have nothing to do with MG. I asked him, since he felt it was a false positive, what else would we test for- he shrugged his shoulders and said he isn’t God and to feel free to get another opinion.
That leads me here. I have fears- what if I leave with no answers? What if I sound neurotic openly sharing all of my symptoms? What if I have to live with this pain for the rest of my life? What if I lose my job because the pain is impacting me at work? What if I’m told it is all in my head and no one believes in me?
My nephew has doctored at Mayo for years because of a rare disease he has and they have been so very wonderful. My head tells me to trust these professionals and the process. My head tells me that whatever I have isn’t life threatening and to stop feeling sorry for myself.
I guess I’m just venting- exhaling all my fears and nervousness then struggling to deeply inhale self-courage, the confidence to articulate what I am experiencing and the belief that someone will hear me and seek answers on my behalf. After all, the unknown might very well be the most frightening experience in all of this.
If you are still reading this, whoever you are, thanks for listening. I just closed my eyes and sent good wishes to you on your personal journey. You are not alone.