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.
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Thank you for your continued posts. As HNA becomes more well documented, I believe many people will be seeking out web sites like yours for more information. Please keep up the good work.
ReplyDeleteThank you for this! I have been dealing with NA for a month on my right side altough the initial attack was very painful on both sides. I'm still in a lot of pain but everything seemed "normal" until this morning I woke up and my knees were in excruciating pain that radiated down my shins. Never had knee pain in my life and it came on just like my initial shoulder pain came on. It had to be related because it's so similar but I looked it up and couldn't find how it could be connected till here. I was really hoping it wasn't hna since I didn't want it to recur but it's nice to have answers. Any more thoughts or tips would be greatly appreciated.
ReplyDeleteFrom http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=hna
ReplyDelete"While the shoulder and arm are primarily affected by attacks in HNA, other sites that may also be involved in an attack include the following:
Lumbosacral plexus in ~33% of attacks
Phrenic nerve palsy in 14% of attacks; may cause orthopnea, respiratory distress and sleep disturbance
Recurrent laryngeal nerve in 3% of attacks; may cause vocal cord paresis resulting in hoarseness and hypophonia
Facial nerve or other cranial nerves (rarely)"
So, although most sites and most doctors are sure to disagree with this, NA can impact the legs and lower back in 33% of cases. the thing that causes the nerve issues does not "know" enough to keep to any one plexus site.
Thank you for this. My fiancé has Neuralgic Amyotrophy. I believe he may well have HNA given that he has had multiple attacks. He has had the typical winging shoulder blade examples, but has also lost the use of his whole left arm on one occasion which you can imagine took a long time to repair and has never been as strong as it once was. I also believe that he is more like to have the Hereditary form since he suffered an attack two years ago on his phrenic nerve and so has partial diaphragm paralysis and breathing difficulties. I read somewhere that it could take about 3 years to see any improvement so we have another year to wait. One year after the phrenic nerve attack, he had another attack in his left shoulder. Today he looks to be experiencing a problem in his right thigh/groin area. We are off to see the doctor to hopefully get a course of steroids - but the doctor is unlikely to know much about it. My guess is that this time it's affected his lumbar sacral plexus and therefore has effected his thigh. I wish there was something that could be done. He had had about 3 attacks up to the age of about 33 and but has had 3 in the last 3 years - he is 42.
ReplyDeleteYour fiancés pattern of attacks is very similar sounding to my own. I currently have a problem with my left upper thigh. It is mostly weakness at this point but on occasion it wakes me up at night with pain. That and lower back, right arm right hand, left arm weakness too with some winging on that side. . . This never seems to stop, but it hits everyone a bit differently too. For the most part it is just very annoying. If he has breathing trouble, that may be something to take more seriously.
ReplyDelete