Good catch, but wrong diagnosis- My Second Attack

Six years into my first recovery, I started to notice something was feeling odd in my right shoulder. When Workman’s Comp closed my initial claim, I asked what would happen if I had a relapse, or a continued problem in my shoulder. I was still working after all, so I knew the chance was that I could injury my arm again. They said, whatever happened would have to be on a new claim, and that I should try to pay attention to my arm to catch any additional problems quickly. Because of this suggestion, when my arm started feeling “off” again, I did not waste any time. I alerted my boss. True to any work place, I was told to stay on the job, and let him know if it changed. And change it did.

This started as a sluggish feeling around my right scapula. This by itself was totally different than before. What followed was very similar. I got extreme pain in my upper arm, and when I say pain- well, you have to experience this to appreciate it. It was the most intense and lasting pain episode I have ever endured. When I finally got up in the morning after a night of sitting up on the couch trying to find a comfortable way to sit, and then not moving except to take more ibuprofen, I could not lift my right arm. I rested it over the weekend, and went to the doctors again on the following Monday. They said- what else, tendonitis.

After a week of rest, they said I was fine to go back to work. A few weeks after that, they discovered my scapula was now winging. For the uninitiated, this happens when the muscles that normally hold the scapula against the body allowing it to move as needed for shoulder movement, for whatever reason fail to hold it any longer. The result is that the shoulder blade moves as you try to move, and droops out of place when it normally would hold firmly against the body while at rest. This causes pops and snapping as you reach for things, and possible muscle pain for the couple of muscles that are left holding normally- abnormally stretched as they may be. My clinic doctors had no idea what this was. I, on the other hand, went home and Googled the following; “Winging Scapula” causes.

The internet is our friend. I found a page that gave 4-5 typical causes for winged scapula. After looking at them, only two seemed probable. One was Parsonage Turner Syndrome, and the other was facial-humeral-scapular muscular dystrophy. I quickly ruled out FHSD because the description of the order of the symptoms appearance did not match my own. I also found a study that had been done on people with winging scapulas generally, and found that two of the fourteen or so in the study also reported a problem with the thumb and index fingers of their hands. Next to those comments, the study referred to “Parsonage Turner Syndrome” as a cause. One of those links got me to “False Anterior Interosseous Syndrome.” This must be what I had earlier. Instead of two different rare things happening to me, it was only one rare thing happening twice. I brought up to my doctors what I had found, and no one had ever heard of it. That was as far as it went. You might think one of them would take the time to look it up as I had done. But, I know doctors do not like to be shown up. And this would have been a major snub at them.

Along my trail of doctors trying to figure this out, I had a Physiatrist whose job it was to give me an EMG test. He found nothing wrong with my nerves, but suggested that I might be checked for FHSD since he noted that my left scapula was not as tight as it normally should be. He also stretched a couple of other symptoms that I either did not really have, or that were not really on the list of FSHD symptoms to justify his diagnosis. It was not his job to diagnose me anyway. In general, I thought he was nuts and did not pay any attention to what he said about my left scapula. As it turned out, he may have really seen a problem there anyway. But, no one, including my other doctors, took him seriously. FSHD was soon ruled out by the specialist that this Physiatrist recommended. This specialist agreed with me that I had Parsonage Turner Syndrome. I again pointed out to my other doctors that this was exactly what I had thought and what I had said months earlier. Still no one seemed concerned about my left side.

Ah, the left side. Everyone thinks this only happens on one side for some reason. I was always concerned about my left side, if for no other reason; my left side had a lot of extra work to do in those times. If I could not do it just right handed, I helped with my left. If my right hand could not do it at all, it was done by my left. I was worried about my left side just giving out from being over worked. Still, every website suggested it was only one sided. Why then was my left arm feeling so weak? The doctors thought it was from overwork. Yep. The right arm is weak because you do not use it enough, and the left one is weak because you overuse it.

My most recent trip to a Neurologist was for a final evaluation of my Workman’s Comp claim. I had already been to one who suggested my problem was not work related as far as a cause, that I had no lasting problem, and that I should be able to lift up to 35 pounds. Who did he examine? It must have been someone else. I would gladly have attempted to lift 35 pound box if he agreed to sit under the box I was lifting. This guy had originally claimed he usually referred people with my problem to a University Hospital. Luckily, he was very late with his final report, and I was allowed to throw out his findings due to his failing his timeliness standard.

The re-exam was with a different Neurologist. This one not only knew what I had, but he had done papers on it while he was working at a University Hospital. (Hey, I wonder if. . . No, probably not.) He saw my right side was not improving. He saw that PTS was also impacting my left scapula, and I was surprised to see also my left hand. And, checking my reflexes on my legs, he told me that I also had impact to my legs. I had feared that, actually all of it. But, having him verify it explains so much. Didn’t the other one test these things? I thought he did, but like I said, the first guy must have been looking at someone else.

So, whatever you find about PTS only impacting one side, it may be more involved than that. PTS not only impacts the brachial plexus, but it can also in rare forms, impact the lumbar and sacral plexus, impacting the lower body and legs. And it can be on both sides. I guess I hit the jackpot. I should have bought a lotto ticket when this hit.