Neuralgic Amyotrophy updated

As it turned out, my neurologist did not get the link to the Vitiligo and HNA being located on the same chromosome- or if he did, he did not mention it in the final report. It would have thrown a monkey wrench into his argument as to a cause for my problems. It is something I am still wondering about though.

One further thing of interest that he mentioned- actually two things now that I remember it- First, he thinks that my current problem with the right scapula is a later flare-up of the first problem that had been diagnosed as Anterior Interosseous Nerve Syndrome. He says that in cases he has seen with both problems, the hand issue preceded the later involvement with the shoulder.

He also said that in cases of PTS or AN- that 30% of time you will see bilateral involvement. So in all those websites that imply it is just on the right, remember that while it might well be “mostly” one-sided, in around 30% of the cases, it may be bilateral to a varying degree. In my case, I do not have winging on the left as I do on the right, but the weakness on the left is just as severe as on the right. I do not have the history of paralysis of my thumb and index finger on the left hand as I do on the right, but I do have a weakness and slow response for fine motor control on the left hand just as I do on the right.

Then, also keep in mind that there is more than one nerve plexus that could be impacted. I have definite bilateral involvement of the brachial plexus (shoulders and upper body.) I also have suspected involvement of the lumbar-sacral plexus (lower body and legs) based on the inconsistent reflexes and certain symptoms I have noticed over the last few years. There is also the cervical plexus (head and face- also frenic nerve to diaphragm) to be concerned with. He did not say directly that I have involvement with that, but I wonder if he thinks I did because of the questions he asked me.

This may be more involved than you have been lead to believe. If you have symptoms that the doctors are ignoring, be insistent. Make them explain the symptoms, or get to a new doctor. Again, if it is only Neuralgic Amyotrophy you are dealing with, it may not be life threatening. But, there are other things out there that are similar. Make sure your doctors rule those things out before you settle on the diagnosis.