Is it really Anterior Interosseous Nerve syndrome, or just a more rare type of Neuralgic Amyotrophy?

PTS/NA can cause symptoms that are exactly like Anterior Interosseous Nerve syndrome (AINS). I know this because I had this diagnosis originally. When my fingers suddenly could not flex to make the traditional “OK” finger gesture, it followed a month or so of arm pain and weakness. At the time, I was told I had a textbook case of AINS. But during all of my exams, no one could tell me why I had AINS.  They kept asking me about the pain in my forearm, which I did not have.  I kept telling them I had pain in my upper arm and a bit in my shoulder. At the time I had checked the known causes of AINS, and found that none of them seemed to match my case.  But, what else could it be?

 Eventually, the other shoe dropped and my diagnosis was altered to PTS/NA and I realized that nerve damage that PTS causes can be misdiagnosed as AINS. That had originally been the reason for this post. I had recently noticed some who had been diagnosed with PTS/NA reporting that they had now also been diagnosed with AINS and now have to worry about two rare diseases. And in some cases surgery had been suggested as a cure.  I had found this article which designates the names of at least some of the nerves impacted by NA.  Notice in the anatomy section the mention of the anterior interosseous nerve

http://wiki.cns.org/wiki/index.php/Neuralgic_Amyotrophy

“Description
Neuralgic amyotrophy is also called Parsonage-Turner syndrome, brachial neuritis, and brachial plexitis. In response to bodily stress (e.g., surgery, flu, unusually excessive exercise, post-vaccination), the brachial plexus, branches of the brachial plexus, or other upper (rarely lower) extremity nerves may develop idiopathic inflammation. The exact cause is unknown. This inflammation is quite painful, which limits use of the arm. As the pain slowly resolves over a few days or weeks, the patient now notices paralysis and a variable degree of numbness in the shoulder and arm. The amount of paralysis varies, with unusually severe cases having complete arm paralysis. Weakness and numbness slowly resolves over time. This may take many months, or even 1-3 years. Although most people improve, the arm may not return to normal and remain partially paralyzed. Brachial plexitis may involve nerves controlling almost any muscle; however, nerves to the shoulder, scapula, and forearm are more commonly affected.

Anatomy
The following nerves may be affected (unilateral or bilateral): brachial plexus, long thoracic nerve, anterior interosseous nerve, posterior interosseous nerve, suprascapular nerve, lumbosacral plexus, and others).”

I hate to see anyone go through surgery that would possibly not be needed or even be an answer for the problem being experienced if there were a viable alternative that may help, namely just to wait it out.  If you have a case as AINS, and do not have the typical causes in your history, it may be caused by PTS/NA.

Well, then I just found this suggesting that maybe doctors have realized that inflammation of the nerves can cause AINS in a similar way as PTS.  See the link here:

http://en.wikipedia.org/wiki/Anterior_interosseous_syndrome

“Most cases of AIN syndrome are due to a transient neuritis, although compression of the AIN can happen. Trauma to the median nerve have also been reported as a cause of AIN syndrome.
Although there is still controversy among upper extremity surgeons, AIN syndrome is now regarded as a neuritis (inflammation of the nerve) in most cases; this is similar to parsonage-turner syndrome. Although the exact etiology is unknown, there is evidence that it is caused by an immune mediated response.
Studies are limited, and no randomized controlled trials have been performed regarding the treatment of AIN syndrome. While the natural history of AIN syndrome is not fully understood, studies following patients who have been treated without surgery show that symptoms can resolve starting as late as one year after onset. Other retrospective studies have shown that there is no difference in outcome in surgically versus nonsurgically treated patients. Surgical decompression is rarely indicated in AIN syndrome. Indications for considering surgery include a known space-occupying lesion that is compressing the nerve (a mass) and persistent symptoms beyond 1 year of conservative treatment.”

Notice it says in most cases it says that surgery would not be indicated for most AINS cases now a days, and outcome for surgery rarely improves the outcome of just waiting.  Unless they can be relatively sure there is something to decompress, you may be better off just waiting.

Experience Project "I have Parsonage Turner Syndrome"

This could be interesting for anyone wanting to see how others have dealt with PTS. There are not a lot sharing stories of their PTS, but it can give you an idea of what it is like for others. Or, you can join and submit your own story of how PTS impacts your life.

http://www.experienceproject.com/groups/Have-Parsonage-Turner-Syndrome/92246

Neuralgic Amyotrophy occurring with Rheumatoid Arthritis?

Neuralgic Amyotrophy occurring with Rheumatoid Arthritis?

http://findarticles.com/p/articles/mi_qa3867/is_1_127/ai_n32054345/

This is a link to an article called “Neuralgic amyotrophy due to rheumatoid arthritis or etanercept: causal association or coincidence”. Among other things, it suggests that NA may be more prevalent than generally thought.

Usefulness of Nerve Conduction Studies in Neuralgic Amyotrophy?

I have seen studies suggesting similar things before. this study suggests that the usefulness of nerve conduction testing may be questionable for NA because some of the lesions may be at the nerve roots and not at the plexus sites. This could be why my nerve conduction tests were not really that much of a help to me. My insurance covered them back then. Not now.

http://journals.lww.com/ajpmr/Abstract/2009/11000/Sensory_Nerve_Conduction_Studies_in_Neuralgic.9.aspx

A better way for Scapular Pushups

My Physical Therapist originally showed me how to do scapular pushups to help strengthen and stabilize my shoulders. I never felt that it did much the way I was shown. Here is a bit more advanced way to try if you want.

http://www.youtube.com/watch?v=ALzFr2GT-Is

Parsonage Turner Syndrome Revealing Lyme disease

http://neurotalk.psychcentral.com/thread72131.html

Maybe my friend who suggested I should be tested for Lyme disease knows more than I thought she did about this topic.

The above link is one of many links to a paper (Wendling D, Sevrin P, Bouchaud-Chabot A, Chabroux A, Toussirot E, Bardin T, Michel F. -Service de Rhumatologie, CHU Jean Minjoz, et EA 3186 -Agents Pathogènes et Inflammation- Université de Franche-Comté, Boulevard Fleming, 25030 Besançon, France) suggesting that NA, AKA, Parsonage Turner Syndrome, has been linked to Lyme disease. The abstract suggests that four patients, who were reported to have NA, were later found to have contracted Lyme disease. One had said they knew they had been bitten by a tick, and all four showed positive for Lyme disease. It concludes that tests for Lyme disease should be performed in all patients who have Parsonage Turner Syndrome.

On Facebook- Parsonage-Turner Syndrome Support Group

Just wanted to let you know- Maybe I was the last to know- that there is a support page for PTS on Facebook. Once you join Facebook, search for "Parsonage-Turner Syndrome Support Group". Good info, and more people out there to share stories with.

Magnesium Deficiency and H1N1 shots related to Parsonage Turner Syndrome?

I notice in reports that some have searched to find my blog with these queries. Do not worry, that is all I can see about the site. I do not see any information about any specific users. . .

Anyway, about the queries-

Flu shots a cause for PTS?

I have never seen any evidence specifically linking any particular injection to Parsonage Turner Syndrome. But, I have seen that Brachial Plexus Neuritis (one name PTS can go by) has at least been linked to certain injections, among them influenza injections. Sites I have seen do not say injections are a direct cause, but only that in certain cases, the only thing that had happened recently to a sufferer is that they listed having had a flu shot. See this site for examples of causes- if you have not already found it. http://emedicine.medscape.com/article/315811-overview

Magnesium Deficiency linked to PTS?

Magnesium Deficiency is a possible culprit in many diseases as I have alluded to in the blog previously. It does cause overall weakness, tremors and twitching and a general feeling of malaise- like you are just winding down to minimal function. In my opinion, if you also have PTS or NA, or even HNA, the weakness associated with PTS can be additive if you have magnesium deficiency on top of it. It was for me at least. But, as a cause, I do not think magnesium deficiency would be a direct cause for PTS in any of its other names. PTS causes winging scapula and other distinct muscular losses, and may cause a general weakness of the impacted limbs. But, low magnesium would produce weakness all over the body by comparison. Also, once you correct the magnesium deficiency, overall strength improves quickly, along with a cessation of other related symptoms like twitches and tremors. Even at that though, my scapula is still winged, and my right thumb is still partially paralyzed.

Keep those joints moving!!!

Hello Blog People- You know who you are.

It has been a while since I have written anything substantial. A week or so ago I woke up in the middle of the night and wrote an entry in my head as I lay there trying to fall back asleep. It still has not been written, but it would deal with the importance of KEEPING YOUR IMPACTED JOINTS MOVING.

(DISCLAIMER- I am not a Doctor or a Physical Therapist- Do any exercise program not prescribed by them at your own risk-)

Movement is essential to regaining any of your strength. What good would it be to get back strength if you could not move the joint? Start passive movement of the joint as soon as you can do so without pain. Your Physical Therapist can give you exercises to help. But remember that PTs are just there to remind you of what you should already know about your body. If you do not use it, you will lose it. In order to use it, it has to be able to move. Strength will follow.

A good and easy passive arm motion exercise is to just bend at the waste, and let the impacted arm hang lose towards the floor. Gently swing it using movement of your upper body. Swing it back and forth, or in a circular motion. Maybe go one way for a few turns, and stop and reverse. Do not use your arm muscles in any way to do this. That is the passive part.

Another passive exercise you may be able to do yourself if your good arm is good enough to lift your impacted arm through its range of motion. Or, you can enlist the aid of someone you trust. I say that tongue in cheek a bit, but trust is important in dealing with allowing someone to lift your arm for you and move it through range of motion you may not have. You have to be aware of when and if it is uncomfortable for you, and they have to be aware that you may not react in time to stop them before you reach that point. It is best to do this after being shown by a Physical Therapist, but if you do not live with one, you may have to improvise.

You can also do arm movement on your back on a bed. At that time, your scapula is fairly well supported, and may actually be in its normal position. When I tried to do range of motion on my back in this way, I was pleased to discover I could do a lot more movement than I thought I could do. But still be careful.

Regular readers know that I have used push-ups as a gage of my strength being there, or not. This is not something you should just start out doing on your own, or at least, not full push-ups. My PT suggested to me that I start with scapular push-ups. For these, you get in the standard position, but instead of lowering yourself to the floor, you attempt to just flex and release muscles of your scapula. It is not easy to describe. Here is a You-Tube video (http://www.youtube.com/watch?v=z4G0lSwL2os). It would be better if the guy was shirtless to see if he had the right technique, but it looks OK to me.

Along with those, there are various stretches to try. Stand in a doorway and put your arm up at a 45 degree angle as if you were motioning for someone to stop. With your arm against the door jamb, push through the door enough to slowly stretch your upper arm.

Then there is wall walking. I tell you, the internet has everything. I was going to try to explain this, but here is a link that does it with pictures. http://nih.kramesonline.com/HealthSheets/3,S,89905 Like it says; do not try this unless you have been cleared by a professional. I was cleared fairly early. In fact, I think it may have been too early. It was at least before they knew I had the scapular winging. But, the range of motion and strength I have to lift my arm over my head are because I did this exercise from the beginning.

What if your arm is OK and you have a problem elsewhere? Well, for me, my hand was also impacted a few years earlier. All they told me was that I should keep my tendons flexible. Be creative. Your hand is a lot easier to do passive exercise on. People may look at you funny, but you really have to make it such a habit to keep your fingers moving that you do it without thinking about it. Do a bit of passive, and then try to actually move the fingers that will not move yet. I mixed this a bit, and physically moved the finger with my left hand as I tried to move finger of my right hand on its own. It would also help to have some sort of electric muscle stimulation treatments. At least, it helped me. I was lucky that a Physical Therapist who was interested in my case loaned me a muscle stimulation unit that was surplus for his practice. I used this at least a couple of times a week as my right hand returned to function.

Well, that is not quite how I wrote it in my head, but it will do. Good Luck getting movement back!!!

Just what are the terms? PTS, NA, HNA, BPN

Parsonage Turner Syndrome would appear to be a more historic version of 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, spoken of elsewhere here. 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. 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. 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.

Here is something from the Seattle Children’s Hospital Research Institute’s Research Center for Genetics and Development

Here is the site.

They are doing research on HNA and a few other genetic diseases. I have cited web pages before with previous research done by Drs Hannibal and Chance.

Long term Pain and Fatigue Study

In the March 2009 Archives of Physical Medicine and Rehabilitation there is a study listing (Long-Term Pain, Fatigue, and Impairment in Neuralgic Amyotrophy) that says “it has become clear that neuralgic amyotrophy (NA; idiopathic and hereditary brachial plexus neuropathy) has a less optimistic prognosis than usually assumed.” Great, I thought it would be good news. They conclude “A significant number of NA patients suffer from persistent pain and fatigue, leading to impairment.”

Part of this no doubt is because if your NA is the type that recurs, you are just getting to feel a bit better from one attack when another one takes you down again. Anyone who has NA or HNA could probably come to that same conclusion.

Merck Manual says this about Plexus Disorders

I just found this in Merck Manual On-line

http://www.merck.com/mmpe/print/sec16/ch223/ch223i.html

“Disorders of the brachial or lumbosacral plexus cause a painful mixed sensorimotor disorder of the corresponding limb.

Because several nerve roots intertwine within the plexus, the symptom pattern does not fit the distribution of individual roots or nerves. Disorders of the rostral brachial plexus affect the shoulders, those of the caudal brachial plexus affect the hands, and those of the lumbosacral plexus affect the legs.”

They talk about acute brachial neuritis and say:

"The most commonly affected muscles are the serratus anterior (causing winging of the scapula), other muscles innervated by the upper trunk, and muscles innervated by the anterior interosseus nerve (in the forearm—patients may not be able to make an “ο” with the thumb and index finger)."

If any one of my earlier doctors had come across this, it may have saved me a few needles trips to out of town doctors, and therefore saved my insurance carriers some money.

All of my answers were here on one site, and I just had not found it. And, if a doctor along the way had bothered to check their Merck Manual for "Brachial Plexus Neuritis", they would have been refered to this page on plexus disorders.

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.

How did all of this start for me?

Initially, I had what I thought was a work related repetitive motion problem. I had pain in my right upper arm that lasted for a number of weeks. It eventually made my biceps weak, and I had trouble for a while using my right arm to do anything. I should have gone to a doctor right then, but having been raised in a family that did not drop everything and run to a doctor at any sign of a problem, I just put it off. The pain eventually did stop. Or, it at least moved. The next stop for it was in my forearm, a few inches up from my wrist. That tenderness that developed there is what lead to my first lasting symptom. One morning at work, I tried to pick up a pen and realized that my fingers could not grasp it. I could move my fingers just fine, but the tips of my thumb, index and middle finger seemed to be paralyzed. Hey, Wake up! That got my attention in a hurry.

As I said this happened at work, and since I had been doing almost three times the usual workload as far as mouse clicks and intense schedules, I really thought this was a work related thing, and I hoped it was only temporary. I went off to our approved worker’s compensation clinic. They thought it was tendinitis. They were wrong of course, but if I had stuck with that diagnosis, they at least would have taken me off of work for a few days. That rest may have helped. But, they sent me to a hand specialist, i.e. Surgeon, who looked at my hand as I tried to make the “OK” hand gesture, and told me that I had a classic case of Anterior Interosseous Nerve Syndrome. He told me that if I felt I could still work, I should continue. It was a text book case of AINS. I was impressed about how much he knew about it. But, as it turns out, the one thing it appears he did not know, was that the best treatment for it was rest. Why was that? I already have said the answer. He was a surgeon. He wanted to fix me, but his fix involved an immediate tendon transfer operation. He told me I was way too old to have any return of function without surgery. I decided to wait it out anyway since even the surgery had no guarantee. I was only getting older anyway, and there was no age limit if I eventually decided to get the surgery.

This was a good decision as it turned out. I was just getting older anyway, so the waiting was easy. I worked my fingers constantly for two or three years trying to keep the tendons limber. I did it is downtime. I did it watching television. I did it when I was walking around at work. After two years, I got a burst of nerve sensation in my index finger. A month or so later, I could move the finger fairly easily. Then I got some movement back in the thumb. That is still the tough one. It takes real effort to get it to move at all, and there is almost zero strength in it. I figured I had this beat. It was only a matter of time before I could go back to this surgeon a number of years older still, and show him how well my fingers worked. My body had other things in store for me. As it turned out, as good a match as AINS was as a diagnosis, it was not the correct one. I still had weakness in my right arm. Doctors thought it was from lack of use since I had the hand problem. They were wrong about that.

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.