Parsonage Turner Syndrome (AKA Neuralgic Amyotrophy)

[rbwalton]

Parsonage Turner Syndrome would appear to be a more historic term for the disorder also known as Neuralgic Amyotrophy. Use of that older term honors the doctors who first described the disease that seemed to impact the right brachial plexus in most cases. They noted numerous probable causes including virus, parasites, bacteria, surgery and trauma (other than to the shoulder) that can cause an inflamation to the brachial plexus (aka "brachial plexus neuritis").

In addition to these causes, there is also a more rare type that is caused by a defect on chromosome 17. This is a totally distinct disorder. While you can have recurrence of attacks in the acute form of PTS (NA), it is more common to have recurrence in the hereditary version of PTS, aka Hereditary Neuralgic Amyotrophy. It is also more common for the hereditary version to attack on both sides when it attacks although it would possibly be worse on one side. It is also more likely that if you have the hereditary version, your attacks could involve numerous different plexus sites, other than just the brachial plexus. It is interesting to see sites suggesting that HNA only involves the brachial plexus, and then have it go in to suggest that HNA can also impact your voice and breathing. The nerves for these functions are not in the brachial plexus. HNA can impact the following plexus sites: cervical, brachial, lumbar, and sacral. It also can impact the intercostals.

If your doctor seems to suggest that you have a right winging scapula for example, and you notice that your left arm is also weak, chances are that your left arm is also being impacted. My doctors tried to tell me my right arm was weak from lack of use instead of the weakness being due to NA- of course this was because as we all know, patients generally fully recover from PTS, at least the websites seem to suggest this. When my left arm became weak with similar symptoms, they told me it was from overuse- making up for all of the times I tried to help my right arm by using the left. In truth, the left side weakness is also from NA, or possibly HNA. A later doctor confirmed I also have winging on the left side. If you have weakness in other areas, have it checked out. Your attack may be more involved than your doctors first thought.

All through my initial couple of years of doctor visits, I complained that I had lower back pain. Of course, they concluded it was not related. How could a right shoulder nerve disease also impact the left side of my lower back? Well, now you know. It is possible.

My legs shake in certain positions when trying to hold them against gravity. Is that a possible symptom? Of course it is. My arms and hands shake due to muscle fatigue of my impacted arms. This leg shaking is similar in nature. Since I know that my legs are innervated by a plexus site that can be impacted by NA/HNA, it is not a stretch to think that this is also an impact of the NA/HNA. And now my doctor has confirmed that I may have involvement with my legs

Whatever your doctor calls it, and whatever side your main impact is on, make note of similar symptoms on the other side, or in other regions. They could help in develop a more conclusive diagnosis.