Thank you for your thoughtful words, they're appreciated.
November of last year I noticed that my right leg felt a bit heavy when I was walking, and had muscle twitches when it was resting. It's now progressed to; both legs feeling heavy, both legs having muscle weakness, weakness in my arms (not as bad as my legs though), muscle twitches from just below my rib-cage to my toes (when I'm not using them), muscle twitches in my tongue (had never even heard that something like that was possible-freaked me out), clumsiness in my hands (can't untie my shoes & bought slip-ons), unsteady and unbalanced gait (fallen 5 times since April and stumble A LOT), difficulty swallowing.
I went to see a neurologist when I noticed after the first couple weeks that the twitches weren't stopping, in Dec. He told me it was restless leg syndrome and put me on gabapentin. After a month, the twitches and heaviness were getting worse and his solution was to increase meds and he told me that it would 'get worse before it gets better'. My husband was upset and wanted me to get a second opinion from another neurologist. In January I went to see another neurologist, she ran a slew of tests, EMG abnormal, blood tests for hormones & diabetes & several vitamins normal, Evoked Potential normal, and told me I didn't have restless leg syndrome but a 'disconnect' between my brain and my vision (perception). When I asked her what the actual diagnosis was, she was extremely rude (asked me if I only wanted it so I could post it on social media, then complain all day), needless to say I never went back to her. But I did go back to my previous neurologist in August and he did more blood tests to rule out MG, Parkinson's, and myopathies, after he saw me in his office.
After everything came back negative, he told me he was leaning towards fibromyalgia. I told him I wasn't in pain, I just wanted help in getting my muscles to stop twitching so I could sleep and find what was causing the muscle weakness. He put me on Lyrica (found out after breaking out with hives that I am allergic to it) and then he put me on Flexeril (didn't help). My husband was more upset at him than I was at this point and asked me to try another neurologist. I told him that I would give it one more go, then I was done. So in Sept I went to see the new neurologist and he was really attentive and listened to my descriptions of what was going on, asked me a series of questions, and said he wanted to repeat the EMG because he didn't believe it was performed correctly before. So I had that done again. He called me the next day and said he wanted me to come in. I miss understood him and thought he was going to do more testing, so I told my husband he didn't have to go & I'd let him know what the test was & how it went afterwards. Nope, it was the results of the tests he wanted to go over. He said I have extensive muscle damage, explained what a motor-neuron disease was to me, and told me that I have ALS. He said that he encourages every patient with that diagnosis to get a second opinion and here we are.
Sorry it's a bit long and you didn't ask for this much explanation.