United Brachial Plexus Network, Inc.

I'm not even sure I'm in the right place but any information is greatly appreciated. I have a dear friend who's father was diagnosed with Parsonage Turner Syndrome about 7 months ago. He has declined rather rapidly. He lives in a rather rural area and the doctors there no nothing about this disease. They have him on morphine 24/7 just to conrol his pain. He was perfectly healthy prior to this and is basically just wasting away now. It is really pitiful to see. And it's absolutely tearing my friend up to watch this happening to her dad. I've never heard of this disease before and am searching the net to find out anything I can. And information anyone can give me would be so appreciated. Thank you.

Becky
Many years ago, Debbie Clark, the Chair of the UK Erb's Palsy group was contacted by a lady who contracted this condition after labour ( I think I am remembering this correctly) I will ask her if she still ahs the info she collated for this lady and ask her to contact you with it - or you could e mail her on erbsgroup@hotmail.com
I hope we can help you in this instance
Karen

I have parsonage turner myself. I contracted it two months ago from a viral pneumonia it seems. I have done some research on it and all I have read reports that it is not a permanent issue and that has given me a lot of hope. The pain is excruciating. I have about 60% arm weakness, loss of grasp and reduced reflexes. I have pain in my upper shoulder/scapula area. I have throbbing in my deltoid area that never stops. I get shooting pains down my arm - hand pain - numbess and more. Sometimes I want to move my arm and it's as though my brain is not communicating with my arm - the arm will move but it will move 10 seconds later and maybe in a different direction.

What has worked best for me is heat application. I use the Theracare stick on heat pads. I am also VERY aware of my posture and try to keep it as straight as possible because I have neck pain. I use a special pillow and keep it at a special height that corresponds with my structure - keeping my neck straight. When I sit on the couch I put a roll behind my neck to keep it up. I don't tilt my head when I'm on the phone. I get into the hot bath 2-4 times a day to soak my neck/shoulder/arm. Light traction (done by a massage therapist) has been helpful for the short term but an hour later the pain is back and sometimes worse. I just ordered an Inteferential Estim unit anad a large hot pack that I will use 3-4 times a day. I receive this treatment at the chiropractor's office and it has been very helpful so I will continue to do this at home. Keeping my shoulder and humerus from getting subluxated (out of joint) has also helped tremendously but it took me 3 tries to find a chiropractor who knew how to do this correctly -without causing further pain. Deep muscle massage helps with the muscle spasms, too but you have to find a person who is seasoned and well trained.

At first I protected my arm but then I realized that if I protected it, my muscles would atrophy. So I work through the pain and keep the arm moving. I specifically use my right arm to do extraordinary active things to keep it going. I believe that keeping it going will help. Just a gut feeling. But I am also VERY careful with the movements I choose. I don't choose movements that may bring my humerus out of joint. I just do things that one would normally do with passive range of motion with a child with bpi.

Here is a link that may be helpful
http://www.aafp.org/afp/20001101/2067.html

I was diagnosed with this syndrome immediately after giving birth to my daughter (first child) almost 6 months ago. The pain was so unreal that narcotics were my only option. I was treated with MS Contin, Neurontin, Elavil, and Fentanyl Transdermal patches. The pain subsided to a point that I could live without the medication after two months, but withdrawing from the narcotics was equally painful, making me very sick and depressed. Nearly six months later, I still experience pain, but it isn't to the degree that I need medication anymore. I am in physical therapy twice a week, but am still paralyzed in my right arm. I am sure that the man who was diagnosed seven months ago is having a hard time, especially using the narcotics. They really can suck the life out of you. I wish him the best, and your friend. There really is nothing but time (so I've been told) that can help.

I found this online. I hope it helps.


General Discussion
Parsonage-Turner Syndrome, 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 (brachial plexus). Individuals with the condition first experience a sudden onset of severe pain across the shoulder and upper arm. Within a few hours or days, the muscles of the affected shoulder may be affected by weakness, wasting (atrophy), and paralysis (atrophic paralysis). Although individuals with the condition may experience paralysis of the affected areas for months or, in some cases, years, recovery is usually complete. The exact cause of Parsonage-Turner Syndrome is not known.
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Symptoms
Parsonage-Turner Syndrome, also called Neuralgic Amyotrophy or Brachial Plexus Neuritis, is a common neuromuscular condition. This condition is characterized by the sudden (acute) onset of severe pain across the shoulder and upper arm due to inflammation of the group of nerves supplying (innervating) the muscles of the chest, shoulders, and arms (brachial plexus). In some cases, the pain may radiate down the arm and into the hand.

Within a few hours or days of the condition’s onset, affected individuals may experience muscle weakness, wasting (atrophy), numbness (hyperesthesia), and paralysis of the muscles of the affected shoulder and, in rare cases, muscles of the hand and fingers. In some cases, the condition may affect both sides of the body (bilateral). People with this condition usually recover within a few months although symptoms may sometimes last for a few years. Recovery is usually complete.
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Causes
The exact cause of Parsonage-Turner Syndrome is not known. This disorder may occur following an injection (tetanus, diphtheria or allergy), surgery or infection with Lyme Disease. Some scientists believe that it may be an autoimmune disorder. Autoimmune disorders are caused when the body’s natural defenses against "foreign" or invading organisms (e.g., antibodies) begin to attack healthy tissue for unknown reasons.

Affected Populations
Parsonage-Turner Syndrome can affect anyone, but is seen most often in young adult males.

Related Disorders
Symptoms of the following disorders can be similar to those of Parsonage- Turner Syndrome. Comparisons may be useful for a differential diagnosis:

Peripheral Neuropathy is a syndrome characterized by sensory, motor, reflex and blood vessel (vasomotor) symptoms. These symptoms can occur singly or in any combination. (For more information on this disorder, choose "Peripheral Neuropathy" as your search term in the Rare Disease Database.)

Lyme Disease is a tick-transmitted inflammatory disorder characterized by an early focal lesion, and subsequently a growing red area on the skin (erythema chronicum migrans or ECM). The disorder may be followed weeks later by joint pain resembling arthritis and neurological or heart abnormalities. (For more information on this disorder, choose "Lyme" as your search term in the Rare Disease Database.)

Rheumatoid Arthritis is a common disease that affects the joints. The exact cause is unknown although it is believed to be an autoimmune disorder. It is characterized by a loss of appetite, extreme fatigue and joint pain with deformities. The location of painful joints may change (migration). Very often more than one joint is affected. Pain, early morning stiffness, aching joints chiefly in the hands, knees, feet, jaw and spine occur. Once affected, a joint may remain painful for a long time and eventually become deformed. (For more information on this disorder, choose "Arthritis" as your search term in the Rare Disease Database.)

Standard Therapies
Most patients with Parsonage-Turner Syndrome will recover without any treatment. Physical therapy or surgery may be helpful for some people with this disorder. Other treatment is symptomatic and supportive.

Investigational Therapies
N/A

Organizations related to Parsonage Turner Syndrome
American Autoimmune Related Diseases Association, Inc.
22100 Gratiof Ave
Eastpointe MI 48021-2227
Phone #: 8107763900
800 #: 8005984668
e-mail: aarda@aol.com
Home page: http://www.aarda.org/
NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
One AMS Circle
Bethesda MD 20892-3675
Phone #: 3014954484
800 #: 9999999999
e-mail: N/A
Home page: N/A

Becky does your friends father take any other meds?

I was just diagnosed with it. Any suggestions? The pain is unreal. I am just starting to lose some strength. The doc has me on steroids, vicadin, vitamin b6 and neurontin. From what I have been reading and my consultation, I get the feeling things will worse before they start to get better.

I have read where it can have its roots from immunizations. How long after a shot does it take for the symptoms? I did not have any immunizations; however, I did have blood drawn a week prior to the start of the pain.

My doc tried to sound optimistic but indicated that it is early and most people don't actually get it accurately diagnosed for a month or so. So far the pain has gotten worse everyday for 9 days now.

Any thoughts or suggestions.

I was just diagnosed with it today. Any suggestions? The pain is unreal. I am just starting to lose some strength. The doc has me on steroids, vicadin, vitamin b6 and neurontin. From what I have been reading and my consultation, I get the feeling things will worse before they start to get better.

I have read where it can have its roots from immunizations. How long after a shot does it take for the symptoms? I did not have any immunizations; however, I did have blood drawn a week prior to the start of the pain.

My doc tried to sound optimistic but indicated that it is early and most people don't actually get it accurately diagnosed for a month or so. So far the pain has gotten worse everyday for 9 days now.

Any thoughts or suggestions.

Suggestions? Well, you have to just roll with it, there's really nothing you can do but wait. When I developed Parsonage-Turner I spent about two weeks in the "unbelievably excruciating pain" phase during which I traded in my sleep habits in favor of wandering around the house with tears streaming down my face while clutching at my arm. I hope you've gotten past this stage by now. If so, the worst is over, unless you've got a neurologist who wants to run some painful tests on you.

My advice is to keep the medication intake at the lowest possible level you can bear (it was really hard to say goodbye to Mr. Vicodin.) I was inclined to shield my arm because it became overly sensitive to contact, but I'm sure the disuse contributed to the atrophy that I experienced. I'd suggest that you try to use the limb as much as possible.

Best wishes.

I had never heard of Parsonage-Turner until our school's top offensive lineman was diagnosed with it. Here's an article recently printed about him and his ordeal.

RALEIGH, N.C. -- Chris Colmer has tossed and turned in bed for two months, his left arm burning and his mind racing about his NFL future.

The 6-foot-6, 305-pound senior, one of the nation's top offensive linemen, hasn't played a down this season for North Carolina State after contracting Parsonage-Turner syndrome in fall camp.

The disease, possibly brought on by a viral infection, is causing pain, numbness, tingling and weakness from his left shoulder down to his bicep and into his forearm.

Colmer has seen five neurologists and all said the same thing: It will eventually go away.

But he's seen little progress since mid-August.

"I'm 22 and I have syndromes and diseases," Colmer told The Associated Press in his only interview since he was stricken. "It's depressing. Just the name of it doesn't sound good."

The syndrome, for which an exact cause isn't known, involves inflammation of nerves to the muscles of the chest, shoulders and arms. It begins with severe pain across the shoulder and upper arm, followed by weakness, atrophy and paralysis. Though patients usually recover completely, it can last for months, sometimes years.

Colmer said he takes a fistful of pills every day, from vitamins to sleeping pills to a variety of pain killers.

"It just burns all the time," he said. "Can you imagine this for two months? They're trying to knock this thing out of my body."

When Colmer came to N.C. State from Port Jefferson, N.Y., his goal was to become a teacher, not necessarily a pro lineman. As a player, "I was garbage when I came here," he said.

But after 35 career starts and 2,288 plays, including a team record 151 knockdown blocks in 2002, Colmer came into this season hoping to move up the NFL draft board.

Now, with just three games left for the Wolfpack (6-3), his senior season likely will come and go without any playing time.

"Everybody's ultimate goal is to come into the season as a highly touted player and having scouts recognize who you are," Colmer said. "It's exciting. It's motivation to play for, and then I go down like this and the scouts just wish I was healthy. They've told me if I'm a question mark it's going to be hard for us to draft you."

He attends practice and works on his footwork and hands, then heads to rehab each day to try to add strength to his left arm. He also attends games, helping other offensive linemen with their technique.

"He downplays it so much when he's around us and he laughs and he has fun," star quarterback Philip Rivers said. "But he's told me it's just terrible at home. It's just a waiting game."

"I feel so bad for him," coach Chuck Amato said. "Can you imagine what's going through Chris Colmer's mind?"

It's nothing close to the satisfaction of playing.

"I definitely get teary-eyed every Saturday," Colmer said. "It's tough to wake up knowing that I can't play. I know I can be helping this team out and they can use me."

The emotional pain goes beyond his helplessness to his team. This summer, one of Colmer's closest childhood friends died of cancer at the age of 23.

"One of the things that kills me is I was going to dedicate the season to him and I thought whatever money I got (from the NFL), I would help his family out," Colmer said.

"People say everything happens for a reason. I don't necessarily believe that. One of my best friends dies of cancer. That happens for a reason? My arm went numb on the field and I can't play this season. Did that happen for a reason?"

Colmer's parents have tried to support their son, attending games and gauging his mood.

"It depends on a given day. When he really thinks about what's going on, it gets him down," Jim Colmer said Monday.

"As it lagged on longer and longer it became a major concern. Now it's a major, major concern. It's a question of time and no one wants to put a time limit on it."

There is a possibility Colmer, who has already redshirted, could gain a sixth year of eligibility from the NCAA for a medical hardship.

He would be interested in returning to college if he needs to prove his health to NFL scouts. But it won't be quite the same.

"I can tell you one thing, football won't rule my life like it did," Colmer said. "I appreciate my family and friends at home a lot more now."