Hi everyone. I had weird symptoms starting about 9-10 weeks ago and have had an ALS fear for about that long (so actually way before the ice bucket challenge)
First off, my anxiousness has gotten a bit worse, since I have gotten MRI's, spinal taps, lots of blood work (including thyroid, magnesium, potassium, etc done) and all came back ok, so just makes me feel I have something horrible. Also, I am 25.
I would say my first tiny symptoms started in just one arm and I only waited about 1.5-2 weeks into my symptoms to go see a neurologist. I don't think it was like an ALS specialist, but he said during his internship or whatever, he had worked with ALS patients. I made the mistake of asking him about ALS right away when I went to go see him, which I then think he just added me to the cluster of patients who were worriers, right off the bat.
To me though, the symptoms I was feeling were real. Anyways, he takes about 5-10 minutes, does a strength test on arm and fingers, checks the reflexes then says "nope, no ALS." Then we proceed to talk about possible stress in my life, etc.
Well fast forward to about the end of July (24th or 25th). I went to see that same neurologist again. This time I was feeling cramps in my calves and twitching, especially in my left leg and thigh. I felt also my left foot was getting heavier and I wasn't sure why. This time he only took about two minutes to look me over, didn't do much of a strength test, but checked reflexes and he said again, no ALS.
Just a couple weeks later, around like July 29th, I ended up going to see another neurologist. It was a lady who worked with my first neurologist, although she didn't have as many years of experience. She had gotten some background information from my first neurologist, so I was just worried they both thought I was a nut case at this point and no matter what symptoms I tossed at them, they would just say it was stress related.
When I first went to see this second neuro, she did a full on strength test with feet, hands, tongue, neck, etc. She said it all looked fine. I was originally supposed to wait for my first neuro to get back from vacation to do my first EMG (just to settle my nerves) but she decided she would do it, since she could tell I was extremely stressed at this point. When she conducted the EMG (beginning of August) she only did my left arm and leg (the electric part was done on all four limbs and was fine). She said I was complaining mostly about my left leg, so that's why she decided to do that side.
It came back ok and I was relieved for a day or two. Then about five days or so after the EMG, I noticed my right arm symptoms were coming back. As I write this right now, my whole entire right forearm and hand is cramped like constantly. My right chest (right above the breast bone, has painful twicthes and spasms a lot that tense that part up on my chest) and I get twitches in my hand, but not as much as like the inner part of elbow, forearm and bicep/shoulder and back area on right side. I also have a constant muscle fatigue in bicep area and shoulder. The ONLY time I don't notice these twitches and spasms is when I am asleep. The minute I wake up, they start up again.
I do have twitches in left and right calfs, but not as much as that right arm.
I had read that one guy had twitching that started in his back and chest and that put me over the edge and then all this stuff about the cramping constantly, till the muscle doesn't have the ability to do so anymore and I feel that is what I am going through. I can pick up things, turn a key, button up something still, I just feel this aching and twitching and then look in the mirror and of course I (but only me) can see atrophy in the arm and in my palm. I just feel the stress is ruining my life.
I also read that an EMG can be clean if it's only UMN symptoms and that scared me too.
Please let me know if you have any advice or have gone through something similar. Thank you.