Let me repeat- This is great information- A must read for NA sufferers or caregivers

From : [1] Information on hereditary and non-hereditary Neuralgic Amyotrophy for patients and caregivers
http://www.umcn.nl/Informatiefolders/7130-Neuralgic_Amyotrophy__id-i.pdf 

One thing clear in reading this paper is that my weakness is explained totally by Neuralgic Amyotrophy. No other undiagnosed disease is necessary. It states in other words, that as nerves re-grow, it is possible to regain movement of a previously lost arm function, for example. But, the nerve re-growth may not be complete, allowing for one use or maybe a couple, before having to take a rest. The stamina to have multiple “reps” of an exercise for example, is reduced. The muscles used fatigue very easily.  Maybe, this is what my neurologist was attempting to tell me a few years back. He just did so very badly.  This guy nails it. 

One other thing relates to balance (inner ear) function and hearing losses.  I have had a bit of changes to particularly my left ear. I have constant tinnitus. I have on at least two occasions had vertigo type sensations. One of those was with Nystigmus. Again, I thought these symptoms may be related more to other diseases than Neuralgic Amyotrophy. This paper explains that although it happens rarely, NA can impact hearing and balance. My ears were not impacted this way until after my NA attacks.  

My mind is a bit more at ease since reading this paper. 

Overall, if there is only one document you ever read about the causes and impacts of Neuralgic Amyotrophy, this one would be among the best. It has a lot of information and is very easy to understand.  I have included a permanent link in my Links section of the blog.  

Information on hereditary and non-hereditary neuralgic amyotrophy for patients and caregivers

From Wikipedia, we now have access to this document in PDF format that is in the external links secion of the references.  http://en.wikipedia.org/wiki/Hereditary_neuralgic_amyotrophy

[1] Information on hereditary and non-hereditary Neuralgic Amyotrophy for patients and caregivers
http://www.umcn.nl/Informatiefolders/7130-Neuralgic_Amyotrophy__id-i.pdf

By clicking on the blue [1] above, it should take you to one of the more comprehensive overall reviews of Neuralgic Amyotrophy I have seen yet.  Check it out.  It answered a few questions for me.

More about Myasthenia gravis

Related to the Myasthenia Gravis possibilities, there seems to be a “stress component” to MG as it can be an initial first component to the disease appearing, and exacerbate the symptoms.  See http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1945958/pdf/canmedaj01318-0018.pdf

This is interesting to me, because I have felt all along that my issues are stress related. Sure, NA can have stress as a trigger also, but that seems to be just related to original onset.  The talk with MG seems to be that everyday stresses can make you feel worse right then at the time of the stress.  Still, this is no smoking gun, as the saying goes. But it is interesting to me. 

Weakness continues

Weakness is a strange thing after a while. I still find myself wondering if the source of all of my weakness is NA.  It fluctuates a bit from time to time but is always there at this point.  Yesterday seemed to be a peak in the weak category as I found it almost impossible without extreme effort, to stand from a seated position.  Shaking and straining all the way, I was able to stand.  Does that sound like anything you read about on NA/PTS sites?  Not really. Weakness is a part of this, but how much is NA/PTS related is still not nailed down for me.  What else could it be?

I still go back to the possibility that part of this weakness could be related to Myasthenia Gravis. But I know that what I feel is not text book for MG either.  Sure, I have had double and blurred vision, particularly prior to my shoulder issue in 2006. But when I see how those symptoms relate to MG sufferers, my eye issues seem small by comparison.  My eyes when tested, do not droop, and do not seem to suggest to doctors that MG could be an issue. But, 20 minutes into reading can make my eyelids shut down, and vision go double. 

I see where MG can present as leg weakness impacting ability to stay standing, and that does sound like me.  I start a task that has me bent over at the waist and within minutes, I can feel my back not supporting me, and if I push, I have to get down before I fall down.  It could be NA, but also MG?  Who knows? 

When I am able to do sit-ups, and I pause for a minute and try to do more, it does not happen.  The muscles just do not want to work again that quickly.  Is that more MG than NA?  I wish I knew. 

It pays not to be Too sick-

Not directly related to PTS, but relevant just the same-

Recently a friend told me the experience with Facility fees that seem to be what more and more doctor/hospital relationships are going towards. For example, in the past you may have had a doctor who had an office in a building owned and run by a hospital.  You saw the doctor, and he/she billed an amount to cover the treatment plus whatever other overhead was involved with the visit. And then it was up to the doctor to pay rent so to speak- and cover what that overhead provided by the hospital may be. 

Now, it seems, doctors are being squeezed- probably mainly by Medicare, to provide good patient care, and be reimbursed for less than enough to pay their time, and the fees to the landlord (hospital).  For Medicare patients the fix is already in place. They separate physician charges and facility charges.  For private pay, or private insurance, things have not been set up that way, until now.   Doctors who cannot get reimbursed sufficiently to pay the land lords are entering into agreements where the hospital will take over the billing for facilities charges that have not been separated out previously for private insurance and private pay.  

Recently a friend went to a specialist who had offices in a building run by a local hospital.  They had gone to this doctor before and expected to be billed only for a regular doctor visit. No one at the office said anything different would happen. What did happen was they got billed for the doctor visit, and also for a facility fee by the hospital.  Long story short, the facility fee was twice what the doctor had charged.  For example, the doctor charged around $120 for a certain level of office visit. The hospital billers took that level of visit and plugged it into their model. Out popped a charge for $220.00.  This was for a 15-20 minute visit where the most that was used was a stethoscope, thermometer and scale for the weigh in.  

After a lengthy argument that went up three levels of supervisors, the hospital agreed that the charge was excessive for what they did, and no doubt their protocols need revamping.  They also agreed to reverse the charge totally since they had not chosen to inform patients that this change was happening, and they should have. 

Be careful of unexpected charges, or charges that seem excessive.  I wonder how many patients in this new hospital run group will just go ahead and pay instead of questioning that $200 plus facility charge?  Don’t be one of them!

Flu shot or not?

I know that PTS can be triggered by flu shots and if you have a past PTS event you have attributed to this you may wish to opt out of future flu shots .

I have had at least two PTS events over the years and maybe more really if I look back with present  knowledge of symptoms I did not have at the time. I have had flu shots the last three years and none of my past PTS symptoms were at all a part of them. 

 Maybe this is because I have the inherited type of PTS. Maybe the flu shot triggers an attack in a different way in those with inherited PTS.  I guess in any event I could still be save and not take a chance but at this point maybe the flu is the bigger enemy to my overall health and to the health of those around me. I choose the shot. If I get a bout of PTS so be it. I am bound to have an attack at some future time anyway. 

tremor causes shift to right hand trackball use and other updates

The tremor with my left hand is now at the point I have had to change back to using my right hand for my trackball. And quite frankly, the left hand feels like it is not mine right now even typing this. It seems as if it is taking a bit more concentration than usual to type. I have been using my left hand for trackball use ever since 2001 or so when my right hand was subject to my first documented NA attack. Recently I have had increasing difficulty getting my fingers of the left hand to cooperate and smoothly move the pointer. Also, if I have to select text in this way, it is almost to the point of being an impossible task left handed. Now, after ten years of left handed trackball use, it is very odd to see that thing over on the right again, and even seeing it there it is hard to stop reaching for it on the left side. I guess I had the same trouble initially when I switched from the right side to the left. I will get used to it. I am not sure I will ever be used to the tremor though.

And this tremor is not just on the left. It is also on the right, built the right side tremor is a bit less invasive in everyday tasks. It is interesting that I even now at times think I am getting better as far as the tremor goes. Then I try to do some simple task requiring both hands and it is all I can do to keep them steady enough to come close to doing it. The trackball is one thing. Using a nail clipper is getting a bit hard if I use the right hand to clip the fingers of the left. Oh well. There are worse things out there to deal with.

Pushup strength is still way down.

I tried to do a yard related painting project the other day. And I was able to do it, but slowly. I had to reach out in front of me and upward to stain wood on the underside of a roof. After a couple of seconds of brushwork, I had to drop my arm. Then after a sort rest, I would apply more stain and then a few more seconds of brushing and I would have to drop my arm again. There is no pain associated with this action, even if I push it with all my strength. What causes the arm to drop is simple muscle fatigue. There is just not enough muscle stamina to hold my arm out and do something with it. It has been like this for close to ten years. It never gets any stronger.