new to forum with Parsonage Turner Syndrome (aka Brachial Plexus Neuritis)
Posted: Sun May 11, 2008 8:53 pm
Hi All
I am new to the group. I first started having problems in 2000, when my right thumb and index finger became partially paralyzed. That was originally diagnoses as anterior interosseus nerve syndrome. I should have known it was not quite the correct diagnosis because I did not fit any of the causes for that. Doctors wanted to do tendon transfers at that point. I waited, and ended up regaining most use of my index finger and movement of my thumb a couple of years later without surgery. I still have no strength in my thumb, and grip strength of the hand is not great.
While I was working on getting my thumb better- or at least hoping I still had a chance of that happening- I noticed one day in Oct 2006 that my right shoulder felt loose. There is no better way to describe it. It just had too much play in it. After having this go on for a few days, I developed a nasty case of tendonitis in the right shoulder, and went to see a doctor. They did not notice anything particularly wrong, but put me off work for a few days since I could not lift my right arm at all. When I returned to get an OK to return to work, once again they did not notice anything odd. Since I could again lift my arm, they said I could go back to work. I returned for a checkup a couple of weeks later, and the clinician noticed that my right scapula was winging. I still had the sensation of the joint being too loose, so I figured eventually they would find something wrong. I really do not know if they had just missed it before, or of it just took that long for the scapula to drop. They again had no idea what was happening. They asked if I had any trauma recently to my long thoracic nerve, but I had not.
I did a search on the internet, and found the Parsonage Turner Syndrome (or brachial plexus neuritis) explained my winged scapula, and the past problem to my right had also. My doctors would not listen to my findings.
They followed up with doing MRI of the shoulder that verified that it was collapsed, and prone to impingement syndromes. But, a nerve conduction test found no impingement. In fact, the “doctor” who did the nerve test pronounced that my nerves being fine, I must have a muscle disease- even though his test also verified that my muscles were responding. This tuned into a mess. They forced me into a 700 mile round trip to a specialist who confirmed that I had brachial plexus neuritis just as I suspected.
Somewhere in this time, I realized I had Thoracic Outlet Syndrome. That seems to go with the shoulder collapse, and tends to limit my use of my arm above my head, since the blood stops flowing if I raise my arm too high.
Since acute brachial plexus neuritis does not seem to recur very often, I must conclude I have the genetic version, even though my family history would not suggest this. It does not really matter anyway, since I have had two flare-ups, I will likely have another- whatever the cause.
I am learning to live with this. I would love to be able to grasp things right handed. I tend to drop things as it is. If I am lucky, the things I drop are not breakable, or if they are- no one is there, and I can blame the cats for the damaged items. Dropping things in public is not so easily explained. Of course my doctors think I am dropping things because I am not using my right arm and hand enough. You see of course, if I was not using my right arm and hand, I would not be dropping anything. I am afraid though, that I am over doing things left handed. You cannot win with this, and doctors seem to be clueless. Even if they know what it is, they do not seem to understand it.
Thanks for reading this.
Richard
I am new to the group. I first started having problems in 2000, when my right thumb and index finger became partially paralyzed. That was originally diagnoses as anterior interosseus nerve syndrome. I should have known it was not quite the correct diagnosis because I did not fit any of the causes for that. Doctors wanted to do tendon transfers at that point. I waited, and ended up regaining most use of my index finger and movement of my thumb a couple of years later without surgery. I still have no strength in my thumb, and grip strength of the hand is not great.
While I was working on getting my thumb better- or at least hoping I still had a chance of that happening- I noticed one day in Oct 2006 that my right shoulder felt loose. There is no better way to describe it. It just had too much play in it. After having this go on for a few days, I developed a nasty case of tendonitis in the right shoulder, and went to see a doctor. They did not notice anything particularly wrong, but put me off work for a few days since I could not lift my right arm at all. When I returned to get an OK to return to work, once again they did not notice anything odd. Since I could again lift my arm, they said I could go back to work. I returned for a checkup a couple of weeks later, and the clinician noticed that my right scapula was winging. I still had the sensation of the joint being too loose, so I figured eventually they would find something wrong. I really do not know if they had just missed it before, or of it just took that long for the scapula to drop. They again had no idea what was happening. They asked if I had any trauma recently to my long thoracic nerve, but I had not.
I did a search on the internet, and found the Parsonage Turner Syndrome (or brachial plexus neuritis) explained my winged scapula, and the past problem to my right had also. My doctors would not listen to my findings.
They followed up with doing MRI of the shoulder that verified that it was collapsed, and prone to impingement syndromes. But, a nerve conduction test found no impingement. In fact, the “doctor” who did the nerve test pronounced that my nerves being fine, I must have a muscle disease- even though his test also verified that my muscles were responding. This tuned into a mess. They forced me into a 700 mile round trip to a specialist who confirmed that I had brachial plexus neuritis just as I suspected.
Somewhere in this time, I realized I had Thoracic Outlet Syndrome. That seems to go with the shoulder collapse, and tends to limit my use of my arm above my head, since the blood stops flowing if I raise my arm too high.
Since acute brachial plexus neuritis does not seem to recur very often, I must conclude I have the genetic version, even though my family history would not suggest this. It does not really matter anyway, since I have had two flare-ups, I will likely have another- whatever the cause.
I am learning to live with this. I would love to be able to grasp things right handed. I tend to drop things as it is. If I am lucky, the things I drop are not breakable, or if they are- no one is there, and I can blame the cats for the damaged items. Dropping things in public is not so easily explained. Of course my doctors think I am dropping things because I am not using my right arm and hand enough. You see of course, if I was not using my right arm and hand, I would not be dropping anything. I am afraid though, that I am over doing things left handed. You cannot win with this, and doctors seem to be clueless. Even if they know what it is, they do not seem to understand it.
Thanks for reading this.
Richard