Sunday, May 13, 2012

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.

Friday, April 13, 2012

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.

Sunday, February 26, 2012

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. 

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.