This is NOT Turner Syndrome

Sometimes I look at reports to see just what people are searching for when they pop into my blog. It is interesting to see that I am not alone in some of the things happening to me, at least judged by the searching terms used to get here. One thing I should mention from time to time is that Parsonage Turner Syndrome is NOT the same thing as Turner Syndrome. If you are here looking for experiences that relate to Turner Syndrome, nothing I have said is related to you. This is one reason I usually refer to what I have as Neuralgic Amyotrophy. That way, no one gets the wrong idea by only remembering a part of the name, or only one of the two doctors associated with it. Doctors Parsonage and Turner were the first to describe this syndrome, and that is the reason those names are associated with it. Turner Syndrome is a totally different thing.

DHEA for tremor and strength issues

I had mentioned that I was trying DHEA for some control of tremor and better strength, and at first it seemed to be helping. It still may be except it seems the help to my tremor and strength comes at the expense of my eyes. The longer I used the DHEA, the more irritated my eyes became. My eyes got tired earlier and earlier each day. I also noticed this in reading, or trying to. It got to the point that after reading for a few minutes, I noticed eye irritation. This lead to stinging and tearing of my eyes, and was rapidly followed by dryness. This gets a bit distracting while reading. So I stopped it.

Within a couple of days, I could read for increasingly longer intervals, and now I can read about as long as I want to. But, I have noticed the weakness returning and a bit more of the tremor again. It goes on.

The Internet is an amazing thing

It is interesting that I see my little blog popping up when I search for information about HNA, or PTS. This time though it was a bit more weird. I was viewing stories from the Expereinces website I had linked the post prior to this one. I started to think, I have got to add a comment about this one post. The writer had pain in his lower back and his doctors said it could not be related to PTS. I was going to comment about how PTS can hit any of the plexus sites, and then saw that someone had not only beat me to it but they had left a link to my blog entry that talked about this.

Experience Project "I have Parsonage Turner Syndrome"

This could be interesting for anyone wanting to see how others have dealt with PTS. There are not a lot sharing stories of their PTS, but it can give you an idea of what it is like for others. Or, you can join and submit your own story of how PTS impacts your life.

http://www.experienceproject.com/groups/Have-Parsonage-Turner-Syndrome/92246

Neuralgic Amyotrophy occurring with Rheumatoid Arthritis?

Neuralgic Amyotrophy occurring with Rheumatoid Arthritis?

http://findarticles.com/p/articles/mi_qa3867/is_1_127/ai_n32054345/

This is a link to an article called “Neuralgic amyotrophy due to rheumatoid arthritis or etanercept: causal association or coincidence”. Among other things, it suggests that NA may be more prevalent than generally thought.

Strength update and more- or less

The last time I could do push-ups. . .

Well, that would have been towards the end of last September. Since then, I seem to have been stuck on being able to do 3-4 at any one time. At the same time, I have seen a decrease in my ability to stand for more than an hour or two without lower back and upper leg muscles feeling so weak, I have to sit.

This reminds me of a time before either of my known flares, so this goes back to maybe the 1997/98 time span. I also remember noticing my upper legs tremor a bit in that time after exertion. This has me wondering if my legs and back were early signs of NA flare at that point, since this pre-dates my hand issue by close to three years. But I also have a memory of a time in that general time period where my job had changed and I noticed a slight pain (compared to what followed a few years later) in my upper right arm. I remember noticing that arm pain and even telling my employer at the time. But the pain went away, so it never was officially part of my medical history.

I had other neck and shoulder pain episodes in my earlier days- none of which were ever reported to doctors since I had no insurance at the time, and they were not workman’s comp issues at the time either. I guess I am just wondering how and when this all really started. It may well be I have had mini-flares most of my life. All of these mini-flares have taken a toll on me since they seem to be additive in nature, and I have reached a point of diminishing returns.

My current “weak” period is at five months long, and counting. I am not sure why I bother counting it actually since there have only been three or four weeks of more or less normal strength over the last four years. I guess it is safe to say that I have recovered all from my 2006 episode that I will ever recover- and that is not saying much. At times I still feel as if I am still growing weaker as time goes on.

More Social Security Disability stuff- I am approved

Now I know it can be done on a more personal level. When I had my phone interview at the time I applied, the caseworker asked me if I would like to set up auto-deposit for when and if I was approved. He suggested that it might be a quicker way to find out my approval status than waiting for the letter in the mail. Well, it was true that it was faster. I assumed my bank must have made a mistake until I looked up the transaction and discovered it was a direct deposit from the Social Security.

What I suggested a ways back is true. As it turned out, I have more than one thing going on that has impacted more than one limb. But the important thing is that what I have limits my ability to have a sustainable gainful employment. What I also want to say relates to attorney input, or even to those folks out there who help you in the application process. I would suggest it is worthwhile to attempt to do this on your own. I am not sure I see any way that anyone could have helped me do this any easier than it turned out, and I had a case that spanned more than 10 years with two workman’s comp cases thrown into the mix.

It takes a bit of organization, and it takes good record keeping all along the journey your illness or injury may take you. Keep copies of all your doctor records along with dates and who did what, when. Keep all reports. Turn it all in when you apply. Be truthful and complete in all answers. Be patient. I made my claim on July 10, 2010. I had my Social Security doctor exam on 12/2/2010. Money went into my bank account on 02/17/2011.