Still Super stressed out about my visit to the neurologist and trying to stay positive.
I’m not quite sure if he is a general neurologist or a neuromuscular specialist? I was referred to “rapid neuro” through the hospital.
I called my family doctor and asked him if maybe the neurologist had written something down on my file that would cause him to even mention ALS…
My doctor said he wrote that my reflexes and strength were good, no visible atrophy or neuro issues. He wrote down that he suspected BFS and would send me for an EMG.
My doctor tried to calm me down a lot.
What sticks out to me the most is when he said he is leaning towards BFS, but it is “still early” and he wants to do the EMG to rule out ALS.
This absolutely terrified me. Like twitching is the first symptom but weakness could be next? Now I find myself constantly checking my strength and for atrophy while I am still twitching like crazy. Today under my eye and the left side of my neck/chest.
I just wish he gave me more explanation? Like why wouldn’t it be something else?
I’m getting pain in my left shoulder and neck, just feels strained. When i move my chin down or my neck to the left it triggers my lip twitch. This is the only one that can be triggered.
I was so hoping he would mention slip disk or maybe pinched nerve…more that just ALS or BFS.
Its going to be a long 3-8 weeks of worry and stress.
Well all you can do now is work with your doctors.
To all our mind and experience you have been cleared of ALS and we are thrilled for you.
We can't do anything more as we have never seen you or examined you and aren't even doctors.
All the best, whatever is going on, I hope it is soon solved, but it ain't ALS and we ain't the place to be.