Previously, I had mentioned that the genetic version of PTS was thought to be caused by a gene defect on Chromosome 17. There are only 200 families known to have this particular defect. This is known as Hereditary Neuralgic Amyotrophy, or Hereditary Parsonage Turner Syndrome on some sites, although I suppose more now seem to recognize the name HNA when dealing with the hereditary type. One thing that my Neurologist pointed out, which I had realized before, is that I have Vitiligo. Looking at this, which I had never thought to do before, I found that it is linked to the same Chromosome 17.
From Wikipedia on Vitiligo (http://en.wikipedia.org/wiki/Vitiligo)
“Vitiligo is associated with autoimmune and inflammatory diseases, commonly thyroid overexpression and underexpression. JA study comparing 656 people with and without vitiligo in 114 families found several mutations (single-nucleotide polymorphisms) in the NALP1 gene.The NALP1 gene, which is on chromosome 17 located at 17p13, is on a cascade that regulates inflammation and cell death, including myeloid and lymphoid cells, which are white cells that are part of the immune response. NALP1 is expressed at high levels in T cells and Langerhan cells, white blood cells that are involved in skin autoimmunity.”
From Wikipedia on HNA (http://en.wikipedia.org/wiki/Hereditary_Neuralgic_Amyotrophy)
“Hereditary Neuralgic Amyotropy, alternatively referred to as HNA, is a neuralgic disorder that is characterized by nerve damage and muscle atrophy, preceded by severe pain. It is caused by a mutation to the gene locus 17-q25 of the septin 9 gene. While not much is known about this disorder, it has been characterized to be similar to Parsonage-Turner syndrome in prognosis.[1]”
I am not sure I understand the implication, if any. But, I understand why my Neurologist was interested in my Vitiligo.
Saturday, May 23, 2009
Thursday, May 21, 2009
Parsonage-Turner Impacts
There is not a lot of complete information out there on PTS about how it impacts the lifes of those who have it. From my experience, too little is made of the impact this can have on someone unlucky enough to get it- for whatever reason. People see it impact the right shoulder most of the time, and assume it only impacts the right shoulder. People with acute cases and a known one time cause do not appear to have impact elsewhere, so no one looks to see if that is the case with all. They just seem to assume it. If doctors do notice impacts on the other side, they make the wrong conclusions about the cause.
No one who looked at me in the earlier days of my problem even had a clue what this was all about, even after they had agreed with my diagnosis that I had found on the internet. They still assumed that it only impacted my right side, and that I would get better like most patients. Now that I know the overall impact on my left arm and hand, and my legs is a real thing, and not just in my imagination, or my fear, I can think back on my life at the time of my original hand problems and remember details that tell me that this was impacting me all over, even shortly after my thumb and index finger became paralyzed in 2000.
At this time in 2000, I had played guitar and banjo to some extent. I was never satisfied with how I played, but that is a different matter. I had certain things that I could always play, even if I had set the things down for a number of years between attempts. When my right hand became impacted, I tried to play to see if I could still do my finger picking right handed with the loss of movement to my thumb and index finger. Oddly enough, the problem I saw was that my left hand seemed to respond too slowly to make the chord changes. Even with practice, the speed did not increase at all, and my overall ability to make the chords correctly was diminished by a lack of strength. I assumed it must be something like arthritis, even though at that point, my left hand did not feel like that should have been a problem. Maybe it was related to the PTS that I did not know about at that time.
Around that same time, I had been a fairly consistent bike rider, usually in the area of 20-25 miles a week. I know that is a minimal amount for a real avid bike rider, but I am not talking about having been Lance Armstrong. I had a real job, and just rode for my own pleasure mostly on a weekend. My point is that at that time around 2000, my legs would have been in the best overall shape they had been in since I was very young. Yet, shortly after my hand problem started to manifest, I started to notice that my legs became fatigued very easily, and if I tried to do certain things I would have to stop because my legs would start to shake from the muscles being overused. It never occurred to me that anything might be wrong. I never put this leg fatigue together with the left hand slowing down in my guitar playing or linked both of those to my right hand trouble. Why would I have put those isolated symptoms together? I am sure any doctor I may have approached about it would have laughed at me. It was obvious my trouble was only in the right hand.
I do not mean to suggest that anyone else diagnosed with PTS would have my same range of symptoms. For all I know, I am the only one. But, just in case you have noticed some other strangeness in your own PTS that is not related to what commonly occurs, do not just ignore it, or go on blindly believing that no other limb can be part of this. Keep open minded about it.
When my right hand had problems, the weakness in my right arm was attributed to my not using my right arm. Actually, that weakness was due to PTS and the loss of muscle mass and control it contributes to. When my right shoulder became impacted by its own issue, the weakness I mentioned I had in my left arm was attributed to my overuse of my left arm to compensate for the loss of my right arm strength. It really was due to the PTS again showing me that in my case, it has a bilateral nature. When my legs started to really show they were impacted, it was not from physical inactivity. It was the PTS again, showing that whatever the cause of the attack may have been, it did not specifically limit itself to one region of the many plexus areas, and it did not limit itself to only one side.
I remain weak in both arms, and my hands seem to have lost fine motor control. Just yesterday, I had major pain in the right side of my neck. I wonder what that means. I know this seems to be ongoing with me anyway. What am I going to lose control of next?
No one who looked at me in the earlier days of my problem even had a clue what this was all about, even after they had agreed with my diagnosis that I had found on the internet. They still assumed that it only impacted my right side, and that I would get better like most patients. Now that I know the overall impact on my left arm and hand, and my legs is a real thing, and not just in my imagination, or my fear, I can think back on my life at the time of my original hand problems and remember details that tell me that this was impacting me all over, even shortly after my thumb and index finger became paralyzed in 2000.
At this time in 2000, I had played guitar and banjo to some extent. I was never satisfied with how I played, but that is a different matter. I had certain things that I could always play, even if I had set the things down for a number of years between attempts. When my right hand became impacted, I tried to play to see if I could still do my finger picking right handed with the loss of movement to my thumb and index finger. Oddly enough, the problem I saw was that my left hand seemed to respond too slowly to make the chord changes. Even with practice, the speed did not increase at all, and my overall ability to make the chords correctly was diminished by a lack of strength. I assumed it must be something like arthritis, even though at that point, my left hand did not feel like that should have been a problem. Maybe it was related to the PTS that I did not know about at that time.
Around that same time, I had been a fairly consistent bike rider, usually in the area of 20-25 miles a week. I know that is a minimal amount for a real avid bike rider, but I am not talking about having been Lance Armstrong. I had a real job, and just rode for my own pleasure mostly on a weekend. My point is that at that time around 2000, my legs would have been in the best overall shape they had been in since I was very young. Yet, shortly after my hand problem started to manifest, I started to notice that my legs became fatigued very easily, and if I tried to do certain things I would have to stop because my legs would start to shake from the muscles being overused. It never occurred to me that anything might be wrong. I never put this leg fatigue together with the left hand slowing down in my guitar playing or linked both of those to my right hand trouble. Why would I have put those isolated symptoms together? I am sure any doctor I may have approached about it would have laughed at me. It was obvious my trouble was only in the right hand.
I do not mean to suggest that anyone else diagnosed with PTS would have my same range of symptoms. For all I know, I am the only one. But, just in case you have noticed some other strangeness in your own PTS that is not related to what commonly occurs, do not just ignore it, or go on blindly believing that no other limb can be part of this. Keep open minded about it.
When my right hand had problems, the weakness in my right arm was attributed to my not using my right arm. Actually, that weakness was due to PTS and the loss of muscle mass and control it contributes to. When my right shoulder became impacted by its own issue, the weakness I mentioned I had in my left arm was attributed to my overuse of my left arm to compensate for the loss of my right arm strength. It really was due to the PTS again showing me that in my case, it has a bilateral nature. When my legs started to really show they were impacted, it was not from physical inactivity. It was the PTS again, showing that whatever the cause of the attack may have been, it did not specifically limit itself to one region of the many plexus areas, and it did not limit itself to only one side.
I remain weak in both arms, and my hands seem to have lost fine motor control. Just yesterday, I had major pain in the right side of my neck. I wonder what that means. I know this seems to be ongoing with me anyway. What am I going to lose control of next?
Tuesday, May 12, 2009
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.
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.
Wednesday, May 6, 2009
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.
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.
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.
Monday, May 4, 2009
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.
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.
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