What is Parsonage Turner Syndrome?

This is an affliction that affects 4,000 to 5,000 people per year in the US.

As diseases go, that is nothing. But for those of us that have it, it is enough. OK, I am not talking about any life threatening process here, or am I? Who really knows? There doesn’t seem to be a lot of real interest out there in studying something that appears so mild and attacks such a small number of people. And those who do get the problem, all 1.6 per 100,000 new people per year, Hey, they all get better within 5 years of the initial attack.

The thing is that is not really a rule that is set in stone. If you look at the websites that talk about any one of the number of synonyms for Parsonage Turner Syndrome, they will have a number of things in common. After all, most of the sites are just re-publishing results from the same couple of studies. They start out saying this is a rare cause of shoulder pain, and then in the same breath say it is very common. And, they suggest that most people recover fully in the first 5 years.

This site http://www.healthline.com/galecontent/parsonage-turner-syndrome is pretty good-

“Parsonage-Turner syndrome (PTS) is a rare syndrome of unknown cause, affecting mainly the lower motor neurons of the brachial plexus. The brachial plexus is a group of nerves that conduct signals from the spine to the shoulder, arm, and hand. PTS is usually characterized by the sudden onset of severe one-sided shoulder pain, followed by paralysis of the shoulder and lack of muscle control in the arm, wrist, or hand several days later. The syndrome can vary greatly in presentation and nerve involvement.”

And then from the same site:

“PTS, also known as brachial plexus neuritis or neuralgic amyotrophy, is a common condition characterized by inflammation of a network of nerves that control and supply (innervate) the muscles of the chest, shoulders, and arms. Individuals with the condition first experience severe pain across the shoulder and upper arm. Within a few hours or days, weakness, wasting (atrophy), and paralysis may affect the muscles of the shoulder. Although individuals with the condition may experience paralysis of the affected areas for months or, in some cases, years, recovery is usually eventually complete.”

Here you have the common problem with this. How can it be rare and common? Also, note the “unknown cause”. For someone trying to figure out a diagnosis, that is a hard thing to get past. The doctors will want to know a cause. And there are a few things that can cause this. Causes can be bacterial or vial or infections or parasitic, surgery or trauma to parts other than the shoulder. There is also an even more rare form that is caused by a defect on chromosome 17. This usually impacts younger people and has the difference that it can impact right and left sides of the body and can recur. Generally this runs in families, and should be easier to point out. Hey, I have this, and my son has it. It must be the chromosome defect version of PTS. Since my first real attack came when I was in my later 40’s, I would not be a good candidate for this. I do not know of any family member who also has the problem, but my family has never been real good at going to doctors, so any history I have is not as complete as it may have been otherwise. There are a few stories I have now heard, but nothing can be confirmed.

One thing to say here is that PTS can be confused with other neurologic conditions, and if you suspect you are a sufferer, you should verify the diagnosis with a qualified and knowledgeable doctor. Hey, this is a rare condition after all. It took me five or six doctors (including two neurologists, and a neuro-muscular disease specialist) to nail the diagnosis down completely, and that was after I pointed the initial doctors in the right direction.

My official diagnosis now is Auto-Immune Parsonage Turner Syndrome. Well, that is what it is today. It could also be the one with the chromosome defect. Since I have no verifiable family history, I would have to have a test run. That has not been suggested yet. Both of these seem to have recurring attacks on either side of the body. I had not mentioned my recurrent attacks, or the fact it is impacting both sides now. As I recall, my PTS has always been on both sides, I could just not get anyone to agree with me. You see what little information that was out there suggested it only happened on one side, one time, unless you are so way out there that you have the genetic defect or autoimmune system as cause. Doctors usually do not like things that complicated, so they look the other way or try to say that this is all in your head.

My most recent visit to a Neurologist verified that I have involvement with my left and right sides, although my right arm and hand is much worse, the weakness is to both sides. He also verified something that I have only rarely encountered about PTS- that I also have impact to both of my legs.

I also want to point out- since I see it listed in the sponsered links from time to time- "Turner Syndrome" is in no way related to "Parsonage Turner Syndrome." If you ever click on those, do not expect anything related to what I am discussing here.