Update of my BPN - Parsonage Turner Syndrome

[rbwalton]

Yesterday I finally saw a Neurologist who had some experience with people who have BPN, aka Parsonage Turner Syndrome. This had started as a Workman’s Comp claim because I noticed the first problem while I was at work. This resulted in my right scapula winging, and having general weakness in my right shoulder. I had also reported that my left shoulder at times felt like it was going wrong in some way. It was not the same, but reminded me of the previous sensations I had remembered in my right.

Nine years ago, I had gone through this process when my right hand acted up. I A few months ago, I had my final review for my related shoulder problem, both issues having been caused by BPN. In California, it is a QME (Qualified Medical Examiner) who looks at you and determines the degree of work related issues, and determines the amount of disability you have from what your condition is. Anyway, I had one a few months ago- And he determined that I had no work related disability, and that I had no lasting disability. I was completely normal in other words. Whoopee, I am cured!!! Right. To make a long story short, I did not agree, but what could I do? Well, this guy blew it. In California, reports from a QME have to be completed and mailed out to the patient within thirty days of the appointment. If this does not happen, the patient has a right to throw out the report and start again. If I had agreed with his findings, I may have been more lenient.
Much as I hated to have to go through the four hours round trip drive, and the exam and questions- I did it all over. The difference was night and day. This neurologist not only knew the Parsonage Turner story, he had done a paper on it. I started to mention how the previous doctor had determined I had no lasting problem, and he said- “I can tell just by looking at you that you have a problem.” In fact, he could tell more just by observing me than the previous doctor had been able to determine even with my help.

The update is- I not only still have a big problem on my right side, but he also determined that my left shoulder blade is involved. It is not winging yet, but it is too loose to be 100% functional. *Edit* I just remembered he checked my index finger and thumb-pinch of right and left hands, and I have some loss of thumb flexion on my left hand also. I had not noticed this before. *end edit* He told me that it is also possible that my legs are involved, and asked if I had any leg problems? I had to agree that I have at times had weakness in my legs and uneven muscle response in the act of standing or sitting. He then checked my reflexes. The previous doctor had said my reflexes were good and even in response. The new doctor found that the reflexes of my legs and arms had differences from right to left. Other things of note that he said were related was the fact that I have developed involuntary twitches in various limbs, and fine motion tremors when using left and right hands. His conclusion is that acute idiopathic BPN is extremely rare. Having it recur as mine has is even rarer. And in the absence of other physical issues I do not have, he suggested that my cause may be an autoimmune issue that has impacted both sides of Brachial Plexus, and also my Lumbosacral Plexus.

That may not be good news in the long run for me, since that means it may not be satisfied with the damage it has already done to my upper and lower body- But it is better to know that what I have been going through can be explained. And, it may be that this will turn out to not have a work related cause, but depending on how he writes up the results, having all limbs impacted will make it easier to go on to the next step- filing for disability at Social Security.


Message was edited by: rbwalton

[marieke]

I am glad that you are finally getting some real answers and help! It can be a long time to get them with "weird" neuro stuff!

Keep us posted on what happens

Marieke 33, LOBPI and Transverse Myelitis

[Jordansmom]

Hi! I'm glad that you are at least getting answers which is half the battle when dealing with BPN due to PTS. Been there done that. Now dealing with it is another story. I wish you strength and peace!

[rbwalton]

Hi again- It has been a long time. I have to say when I got verification about this being in both sides of the shoulders- and possibly both legs as well as the other parts controlled by the lower plexus, I thought of you and Jordan. If you ever want to email direct, I have a new address. I wish you the best.

> Hi! I'm glad that you are at least getting answers
> which is half the battle when dealing with BPN due to
> PTS. Been there done that. Now dealing with it is
> another story. I wish you strength and peace!

[rbwalton]

> I am glad that you are finally getting some real
> answers and help! It can be a long time to get them
> with "weird" neuro stuff!
>
> Keep us posted on what happens
>
> Marieke 33, LOBPI and Transverse Myelitis

I thought I had responded to this before. You know, it has taken me almost nine years to even know the right questions to ask. You guys out here have been the best. If anyone is interested, they can follow my progress on my blog below. . .

http://parsonage-turner-syndrome.blogspot.com/

[marieke]

I will add your blog to my blogroll too.

Marieke 33, LOBPI and TM

http://nurse-to-be08.blogspot.com

[Jordansmom]

Hi! I am going to send you an email. Jordan has had some problems with his feet and legs also. Hope you are coping.

[rbwalton]

Hi- I missed this post entirely. I thought this site sent email on watched subjects, but it never has worked for me. If you tried to email, it must have been with my old email address- I lost yours. New one is rbwalton3821@att.net .

> Hi! I am going to send you an email. Jordan has had
> some problems with his feet and legs also. Hope you
> are coping.