Update as I approach 10,000 page views

Hello again, after a bit of an absence.  On the face of it, not much has changed for me really in the last little while.  But, there are subtle differences I am seeing as things go on.

I had what may have been another attack a couple of months ago. It is hard to tell if it was a real attack, or just a continuation of what has been happening all along.  I had a bit of neck and upper shoulder discomfort followed by extreme weakness to my lower back and with some pain in the region of my tailbone.  This went a bit lower actually, into my upper legs, and then seemed to reverse up my back again and ended up with weakness across the bottom edge of scapulas.  I am left now with residual pain at times in my right arm and into shoulder that impacts range of motion, strength of my arm and my ability to sleep comfortably on my right side, just like the old days following my original attack in the shoulder.   Along with this, I have a pronounced weakness in my right calf area (near as I can tell the Gastrocnemius muscle area).

What makes it seem like an attack is the general progression of discomfort and weakness.  But, there was no major pain.  I know from sites and publications that sometimes there is not a lot of pain particularly with HNA, so maybe this is all normal.  

I may remember the initial pain for my shoulder attack.  Did I say this before?  Anyway, in 2002 I had been training for a bike ride.  This was a year or so after my hand and finger issue, so I would still have had a partially paralyzed hand at this time.  The morning of the ride, I woke up and had extreme pain in the area behind my right shoulder blade and could barely hold my head up normally.  That was around 4 years prior to the collapse and eventually winging of the scapulas.  And in a long trip by car in mid 2006, I experienced the first sensations of shakiness that I have now as I repeatedly had to exit and enter the car on this trip across country where I was the only driver.  This trip was just a few months prior to the pain in Oct of 2006 that is linked to my scapular winging beginning.  At the time I assumed this shakiness was due to the long hours of driving daily, but now I know it was an early indication of the onset of the next phase of NA.

It has been a while. . .

Well, I am still here in case anyone has noticed an absence.  Not much has really changed except I am having some pain at times in my right shoulder and neck.  And I am a bit weaker overall.  Yesterday I could barely do one good push-up.  And it was very shaky as always.  I have also noticed slight arm pain in the area between humeral head and shoulder joint, particularly reaching out to pull a door closed as I enter a room.  I have begun to wonder about my breathing too.  I have seen descriptions and videos describing paradoxical breathing,  which can happen in the case of PTS/NA if you have partial paralysis of the diaphragm from phrenic nerve palsy.  


Look here

http://www.youtube.com/watch?v=RFGzdNFuXIM

I do not breathe that way all the time, but I have. Hmm.  Maybe I do more than I am aware.  This is just one more thing to ask a doctor about.

This one is interesting too.

http://www.youtube.com/watch?feature=endscreen&NR=1&v=JeDiS7MWXNk

Seems every muscle group impacting PTS/NA is mentioned here as being an impact on correct breathing.  And it is suggested incorrect breathing can lead to what they call gothic shoulders. Looks to me like winging and a possible “what came first?” scenario.  Those shoulders could be related to what causes the breathing issue more than the breathing issue causing the stooped shoulder posture.  

Health related rant about prescription prices being higher at Wal-Mart than Costco or supermarket pharmacy

I have been getting my prescription for my eyes filled at our local Costco recently.  Their price and the price at a grocery store pharmacy usually runs between $11- $12 for a 30 day supply.  This is their every day price before any insurance, and is for newly available generic version of the medication that had run closer to $100 per bottle in the non-generic.

I had been thinking about switching to Wal-Mart, since my new insurance will be through Humana with a Wal-Mart partnership, and certainly as a Humana member I should expect good prices at Wal-Mart.   I asked, and the price of the same medication at Wal-Mart runs about $60.  I asked- are you sure that is the generic?  Yep.  How much for the non-generic? - Around $102 or so.  (It may have been more.  I was in shock.)   If you have insurance, this is what you would pay until you met your deductable, and then there would be a discount price depending on your plan.  OK, any idea why I can go to at least two other pharmacies in town and get the same thing for $12 or less without having met my deductable?   Nope.  The prices are what the prices are.

Yes they are.   It definitely pays to shop around, insurance or not.  Maybe she was wrong.  I would think though that noticing my reaction to the high price that she had double checked at least that much.  Definitely a rip-off.

Just a bit on legs. . .

In the beginning, I may have had shakes in the legs a bit, and some early fatigue below the knees noted while walking. This is still the case, but I notice even more weakness now. That and weakness particularly to the Jambier anterior- at least that is the one it appears to be.  My neurologist had noted that muscle was particularly atrophied in that areas of my leg a few years back.  I had not noticed problems related to that at the time. But now I notice while driving that my leg gets shakes in the region of that muscle. This was when driving in San Francisco with much stop and go and hills involved.  I was happy when I got back to freeway and could rest my leg by way of cruise control.  Since then, I have noticed leg weakness on the left, early in the morning to the extent it feels as if I could fall if I do not concentrate.

And that may be the biggest concern with this disorder.  It is not that it completely stops you, but that it limits you by requiring concentration to do even simple maneuvers most folks take for granted.  Pay attention, or you drop things. Pay attention or you could fall.  As I age, falling takes on an entirely new level of potential worry. I may be fine otherwise and I fall. I break something, and end up in bed. Lack of movement follows, and then pneumonia. . . It happens all the time.

Neuralgic amyotrophy by Nens van Alfen

I have added a document to my list of links- Neuralgic amyotrophy - Nens van Alfen.  If the name seems familiar, he has written quite a few things I may have already referenced. This appears to be his thesis of 150 or so pages with a section in Dutch if you prefer.  I have only scratched the surface of reading it myself. 

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.  

Why is the shoulder the most common first complaint in NA

http://www.umcn.nl/Informatiefolders/7130-Neuralgic_Amyotrophy__id-i.pdf 

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.”