Friday, January 20, 2012

Short Updates


Well, where am I, you may ask. It has been a while. 

Push-ups:  I still seem to be stuck at being able to do 5, and that is with a lot of shaking. Some things do not ever change.

DHEA: I have started DHEA again at 50 mg a day.  This is a 25 mg tablet twice a day.  Why? Well, I thought I would give it a try since every eye doctor I have asked about it says DHEA had nothing to do with my eye pressure spike of a few years ago.  I see that 50 mg is a suggested daily amount that may be beneficial for aging types, which includes me. So far, I really have noticed a decrease of my fine motor tremor since going to 50 mg a day.  It does not seem to help much on shaking, as noticed on almost anything I do requiring any strength.

Prednisone: There have been a couple of times since the last entry where I have experienced pain in both scapulas, and some pain in my right hand. This was noticed when I made a fist. I took a 10 mg prednisone a day for a few days, and that stopped that. 

Cause and effect or coincidence: I just note what appears to have helped me. Recognize that it all may be coincidental that I notice DHEA helping tremor, since it is not one of the probable benefits as listed in the literature of DHEA. Ditto that for prednisone helping scapula and hand pain. Your mileage may vary.  

Thursday, December 15, 2011

Why is the shoulder the most common first complaint in NA



If you are like me, you may have wondered why it is that the shoulder is the most common first noticed complaint in Neuralgic Amyotrophy attacks. Maybe it never crossed your mind after all.  I figure, if there is a causal agent in the bloodstream, and it finds the shoulder plexus site to attack, it is just as likely to find other nerves at other plexus sites.  It may be clever, but is it really smart enough to be that specific?  If you listen to most doctors, they would suggest “yes”, it is that specific.  If you have any other issues in other areas with weakness, it is either all in your head, or you have something else they can charge thousands of dollars to test for, and come up with nothing.  “Oh well, nothing wrong with you- got to scoot”.   

If you read the document (linked above), there are two things talked about which suggest a reason for the shoulder being the most common joint impacted with NA.  It begins with overall muscle loss, and ends with the efficiency of muscles to do work with impeded nerve connections.  The author first speaks of muscle loss, stating that

“In daily life, people generally do not notice that they are losing muscle strength
until they have lost around 30% of their maximum strength. The strength that lies
between 70% and the maximum of 100% is, as it were, ‘extra’ in case heavy exertion
must unexpectedly be made.”

So, you could have an attack of NA that leaves you with a gradual loss of muscle strength to say 75% of normal, and not even notice it.  I think this actually happened to me, looking back. I had had an attack that impacted my right hand and left my arm weak. But otherwise, I had no clue what was going on, except, on a long car trip, I noticed a bit of shaking at times getting into or out of the car.

Time passed, and one night I woke up on my right side and noticed that my shoulder popped, and collapsed a bit. There was no pain, just the sensation of settling that did not feel normal at all.  Why would this be important? Look to the document again. 

“For most of the muscles, one can say that they function well in daily life
once they have regained 70% of their former strength. However, some muscles
must truly be nearly 100% recovered before they can function normally again.
The muscle that, when it fails, causes a protruding shoulder blade, (the serratus
anterior) is the most important example of this. Because this muscle needs its
maximum strength and endurance in order to work well, it sometimes seems as
if recovery of the nerve to this muscle takes much longer than the recovery of the
other nerves.”

It would seem possible that the muscles surrounding the shoulder are a bit more sensitive to nerve loss than other sites in the body. So that may explain why the shoulder is the first noticed spot that NA impacted, when truly, it is everywhere to some extent.  They go on to say:

“With neuralgic amyotrophy, the strength in the affected muscles is often decreased
to (much) less than 50% of the maximum. It is often not even possible
anymore to carry – or lift – the weight of the arm itself, let alone an extra weight
(for example, a purse or bag). It also becomes difficult to maintain movement or
postures. It is sometimes possible to make a specific movement once (such as
extending the arm or putting something in the cabinet above your head) but it is
not possible to do that a number of times or to keep doing it for a specific period
of time. Both the loss of strength and the difficulty with maintaining movement
are serious impediments for NA patients in their daily work, sports or activities at
home.”

Add to that that any regained strength may be to a lesser amount than what existed prior to the attack. For HNA sufferers, this is augmented by having many more attacks over a lifetime.

Speaking of returning strength. . . Do not do as I did and force it to get better.  Heavy exercise prior to complete healing can lead to further nerve damage and make that nerve even more susceptible to further attacks in the future.

“If, within a nerve bundle, no more than two thirds of the axons are damaged, then
the remaining axons will take over the work of the damaged cables within three
to four months. This mechanism is called: ‘collateral reinnervation’. This repair
mechanism works well because the muscle can then again be completely controlled.
However, this is at the expense of some load endurance. That means that the
muscle can certainly provide maximum strength once but cannot maintain it well
or keep it up for long. In daily life, patients often notice that, after a time, they can,
in principle, carry out all of the movements with the arm, but that the arm becomes
heavy and tired after being used for awhile and they must stop and rest before
they can continue with what they were doing.”


“If the nerve has been affected a number of times, the chance of recovery decreases.
Also, nerves are not able to tolerate everything: If they become even more
damaged, they will be ‘broken’ for good. In practice, this means that the function
of, for example, the arm after an initial period of painful loss of function will still
recover for the most part, but that, after a second or third time, will not recover as
completely and, ultimately, will not be able to recover at all. The loss of strength,
but also the disorders in sensation and blood supply to the skin, then become
permanent.”



Tuesday, December 13, 2011

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.  

Sunday, December 11, 2011

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.

Monday, November 14, 2011

More about Myasthenia gravis



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. 

Tuesday, October 25, 2011

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!