I will try to keep this short even though my symptoms have been long and drawn out. I started having occasional hand/arm weakness last April. This followed by twitching in my arm for a couple of days, then the twitching spread to my entire body. The weakness comes and goes. Sometimes it won't bother me for days or even weeks, then it will come back. It always bothers me more when I use my hands a lot. The more I use them, the worse the weakness gets. The twitching is all over and follows no pattern. I twitch all throughout the day. I have seen a neurologist and she ruled out ALS. I then saw another neurologist who wasn't able to rule out MS, but it doesn't look likely. I have no loss of muscle or wasting and I show full muscle strength in my arms in clinical exams. I am fairly confident that I do not have ALS. I do, however, believe that SOMETHING is going on and that is why I am here... for advice and thoughts. The arm weakness has gone from both arms to the left arm and has most recently bothered my right arm the most. It's always from the forearm down and seems to mostly be in my hands. They get fatigued very easily when I use them with repetitive motion or anything that requires a lot of strength, but I can still lift heavy things, open jars, turn keys, etc. My hands just get tired very easily and I have a feeling of tiredness and heaviness in them at times.
My question is mostly about the muscle twitching. It has never really bothered me at night. Usually when I wake up in the morning, the first thing I will feel is a little twitch here and there in my arms or legs. No big deal. For the past few nights, though, when I wake up, my arms or legs feel stiff from the position they're in, so I move them. When I move them, my muscles go completely nuts. It feels like every muscle in that limb twitches all at the same time. For example, when I woke up last night in the middle of the night, my arms were bent at the elbow and my hands were in a fist under my chin. Almost like I was in fetal position. It felt like they had been in that position for hours and they were sore and stiff. So, I straightened my arms out down by my side When I did this, all the muscles from my wrist to the shoulder started twitching like crazy at the same time. I shook out my arms a little, but they continued. After a minute or two, the twitching slowed down and I fell right back to sleep. This has happened for the last 2 or 3 nights. Before this I would only feel the occasional twitch after waking up. It's not pins and needles either. There's no loss of sensation or tingling feeling. It's definite muscle twitching that I can actually see. It's like my arm is going into a full spasm, but it's completely painless.
I am worried I have some sort of neurological condition as I do have other symptoms as well as the twitching and weakness. I have had pins and needles, brain fog, tinnitus, muscle weakness that comes and goes in other parts of my body (legs, stomach, mouth) but it's rarely in those areas. Usually it's in my arms. I was recently diagnosed with Superior Canal Dehiscence Syndrome. The weakness and twitching literally started up within a week from when the SCDS symptoms first started.
I went through a period of ALS paranoia, scared to death that I had it. I am pretty much over that fear since it has been 5 months since the weakness started and I have no clinical loss of strength and no muscle wasting. I had an MRI of the brain/spine which showed 10 small lesions in the frontal lobe. They have no idea what they're caused from. An MRA showed narrowing of the IJV on both sides.
I would appreciate any advice that any of you might have for me about the twitching. Please don't put any ALS fears back in my mind though. There are many, many other conditions that involve muscle weakness (mine is probably more muscle fatigue) and wide spread muscle twitching. I just don't know which direction to go from here. My neurologist seems to be at a stand still. He hasn't done an EMG but he seems to think I just have BFS. I suppose that could be true, but could BFS cause muscle fatigue and crazy fasciculations? Any help or thoughts would be great!!