I thought I would lay out for everyone what is becoming a typical day for me
8:00 am: I wake up after a restless night of sleep. The longer I remain in bed, the more my legs start twitching and getting odd sensations.
8:00 am - 12:00 pm: Twitches are pretty rampant and all over my body (mostly legs and feet, some left hand, a bit face and tongue). They usually consist of 1-2 jumps in any one place. My tongue starts to have a tingly sensation, and I feel an occasional twitch. My right leg starts to feel pretty weak when I walk for too long (more than 20 minutes or so) or up stairs. If I talk for too long (more than a couple of sentences straight), talking starts to feel and sound awkward. My left hand feels clumsy.
12:00 pm - 1:00 pm: Legs feel weak and start tingling, burning after I walk for 2 miles for exercise. Twitches start fading.
1:00 pm - 3:00 pm: Twitches continue to fade. Tongue still tingles.
3:00 pm - 5:00 pm: Twitches mostly gone. Speech still sounds and feels awkward. Legs continue to feel weak and bad.
5:00 pm - 10:00 pm: Many of the symptoms don't feel as bad.
10 pm: I try to go to sleep. Everything begins to feel better. Occasionally I have twitching. I also get a feeling of tightness in my chest that makes breathing seem somewhat harder.
I've been dealing with crap like this for months (close to 2 years). It started out not so bad, but my symptoms have spread and worsened over time. I've been to 2 GPs, 2 neuros, an ENT, and I have had 3 EMG/NC studies on my legs (mostly right) and arm (left). No one has found anything other than decreased conduction velocity in some of my leg nerves (certainly nothing that screams ALS). An MRI I took in July of last year has was clear except for a misshapen and enlarged thyroid (my TSH and T4 hormones are ok though). I scheduled to see an endo about that, but I couldn't get an appointment until November. I also have an appointment with a new neuro in December. None of the neuros have found objective weakness, and the 1st neuro found brisk reflexes which he said got more normal after a month. The 2nd neuro (I saw her about 1 year ago) was an ALS specialist, and she said after the clinical exam that I "did not have ALS". Her EMG supported what she said.
My question is, after all this time, why are my symptoms continuing to look more and more like ALS? All of this is really impacting my day, and I feel like no one cares about what I am going through because I don't think they really understand what I'm under. I'm afraid of walking too long on the off chance my legs start feeling so weak I can't walk back to where I came from. I'm nervous about talking to people because hearing my voice start to slur is scary. I feel apprehensive about going anywhere that requires doing a lot of standing, walking and socializing. I'm scared about lifting heavy things cause it feels like my arms are so wiped out afterwards. I used to run marathons and lift weights. Now I don't look forward to walking more than 1000 m.