My story is similar to hunterross258.
49 y/o male who is in fairly good shape (running 3 days a week from 3-10 miles each time).
16 months ago I went to my GP for my yearly physical and every year he half jokingly asks me "what is hurting you this year?" . I am now almost 50 so I have little aches and pains like most of us but I had noticed a loss of grip strength and coordination in my non-dominant left hand (I had some cramping but did not mention it since it always appeared when I held a stretch). My GP ran me through a battery of physical tests and after some time said he wanted me to see a neurologist. He had three in the area he liked so I picked one, who amazingly enough could see me within the week.
I go see the neurologist and give him my symptoms and he said the though it was carpal tunnel. I was a little skeptical since it was in my non-dominant hand and since I had absolutely no numbness or tingling but I am not a doctor so I let him do his job. He asked if I wanted an EMG to confirm it and I agreed. He did the test on my left arm and then my right (no trouble in my right so I guess it was the "control") and when he was done he said that I had moderate CTS in my left wrist and mild in my right and ordered me to wear a wrist brace for 60-90 days. I did this religiously for the allotted time, only removing the brace when I bathed, washed dishes, or went running. So all in all I wore it 18-20 hours a day, including when I slept (supposedly that is when most people do the most damage to their wrists).
I went back after 90 days and the neurologist asked me how my wrist was and I told him that it felt worse, weaker...maybe from not being able to use it in the brace. He screwed up his face and said he was still very sure that it was carpel but if I wanted he could run some blood tests and an MRI on my neck just to rule out some things. So I agreed. I continued to wear the brace but only at night. No improvement.
After the test results came back my neurologist called me into his office to discuss the results: No pinched nerve in my neck and the blood test came back normal except for a slightly elevated muscle enzyme, which he said could mean anything.
It was this visit that he noticed the muscles in my left arm twitching and asked me how long that had been going on. I told him that it had been going on for a few months but I never thought much of it. He then asked me if I had any cramping and I told him yes, but I just though maybe it was an electrolyte issue or running related. He seemed very concerned at this point and asked me if I would consent to an open (not needle) muscle biopsy (that was fun...not). Long story, made short I had that done and got the results back and the pathology was inconclusive but it did state that there was "moderate active denervation atrophy". My neurologist said he is concerned now (where when I first came in he thought I just had CTS) and wanted me to get a second opinion as he believes I have ALS. He looked at my face and asked me to position my tongue in various ways and he stated he can see issues there as well.
He has ordered more blood tests but since the lab he uses is out of network I am going to have my GP (I have my yearly coming up next month) order them from his lab (in network) and send them to my neurologist.
My left arm is visibly smaller than my right one is at this time.
Over the past 10 months or so I have gone from having difficulty using my left hand to open things to not being able to at all. Zipper food storage bags are a real pain to open and close, as is buttoning my jeans or using my left hand to button the right sleeve of a dress shirt (I actually cannot do this so I have my wife do that one). When you look at my hands, the left hand has a lot less muscle mass, especially between the thumb and the index finger.
I go see "one of the best" in the state in February. He specializes in ALS.
I am still very active and I still run (I competed in my first Half Marathon in October) but I now notice that during my run my legs feel heavy and I am not getting my feet as high off the ground as I used to.
The twitching has spread to my chest and right arm and some in my legs. Cramps appear out of nowhere in my hands and oddly enough, my diaphragm. My left hand is still the major problem with the cramps turning it into a claw at the drop of a hat. Typing can be a problem.
So I wonder if anyone else has had a similar experience?
