New doctor in the house. . .

The first thing to mention about the comparison between my old doctor and the new ones deals with timeliness.  Can a doctor really be on time?  Can you arrive a few minutes early and actually get in before the scheduled appointment?  Well, after having fought my way in to the last few appointments with my regular old doctor, I can say that “Yes you can.” For my appointment, I got there a bit early and got into the exam room ten minutes or so early. The doctor entered right at my appointment time and apologized that he was late. What?

I had lab work of course.  All in all it was almost the same as it was the last time I had blood work.  The difference was that last time my doctor said- It is all normal.  This time, with virtually the same test results, the new doctor went in detail into the results and what they all meant, and then told me the only slight problem was that I was just a bit anemic and that I could benefit from a dietary supplement of B-12 and iron.  I mean, I already knew that from last time but I had not done anything because I was told it was of no concern to be just a bit off as far as being anemic.  This time, I jumped at getting the supplement because I was told it could help.

Oh, and this one actually examined me. To be fair, it has been a while since I had scheduled a real extensive physical with my old doctor.  But, I would have expected that for whatever reason I have had to see him that he would at least have done a cursory exam, since that was how my visits were billed to my insurance.  The new guy did not do an extensive physical either. But he did a quick exam and found a tiny lump on my thyroid.  It is too soon to say what this is as the biopsy is still in the future.

Long time readers, if there are any, may already know that I have been afraid for a while that doctors would have missed something about my overall health because they were thinking that all my symptoms could be explained by PTS/HNA.  And maybe while I was seeing doctors specifically about that earlier on, they were not really looking at my overall other health concerns as much as I may have thought they would or should do.  You know what though? I am not sure how long this lump has been there, but it is possible it may have been overlooked earlier from lack of interest. I can’t remember the last time any doctor anywhere examined my neck.  They may have had reason to check.  It turns out my thyroid function is still OK, but my thyroid could have been playing a part in my overall weakness.  No one ever bothered to check that before. . .

Legs and minor return of strength

Yesterday I mentioned my legs felt better.  At the same time I noticed that there was a bit less shakiness in them. It has been easier to kneel down and get back up.  This being true, I wondered what the old push-up test would suggest.  The last few times I have made attempts, I have only been able to do one or two, and those have been iffy.  Yesterday, I could do ten.  They were not the best because my right arm is still a bit funky, but I managed to do them and generally felt OK during them.   It is interesting how the return of strength relates to cycles of diminished pain, particularly in my legs.   By the way, ten yesterday is all I am interested in now.  Maybe in a week or so I will try again.  But even if I do not, I can tell when my legs get stronger or weaker what part of the cycle I am in.   I sometimes wonder if anyone seeing me out around town wonders why some days it appears I can barely walk, and other days I am walking fairly normally.  This is truly an odd disease.

Legs a bit better, and a new doctor in my future

You should let me know if you are tired of me and my whacky little posts.  Of course, if you are you will stop reading them I guess.  I will know then.

Just a couple of things. . .  I had been having weird leg pain as mentioned in prior post. It seems a bit better the last couple of days, and almost feels normal right now.  Am I sure this is related to HNA?  No.  But no one has told me it isn’t related.  It would seem that the cyclic nature of the my leg issues seems to fit HNA or what I see of it.  My right arm is still in the mode of aching if I lay too long on it at night- and it definitely wakes me up to tell me.  Last night it was in a dream- in the dream I was having my arm started to hurt and I finally realized it was not just in the dream.

Also- You may remember my mention of my old GP doctor who to my way of thinking was extremely rude to me last time I tried to see him to talk over the results of almost eight thousand dollars of tests he had ordered.  I had called his office to ask if I should come in to talk over the tests results.  His receptionist seemed to think that the doctor would like to see me about the results even though the neurologist had already told me his two cents worth.  I had spent close to two hours waiting past my appointment time.  His words when he walked into the exam room, “What are you doing here? “  After spending all of ten minutes talking to me and basically telling me the neurologist report was all I would get, he told me he had to scoot.  I have not seen him since.  The only good part to the story was that my insurance at the time had a timeliness requirement of two months for billing any charges and since they billed later than that, they got nothing.  I am sure they would have loved to bill me anyway, but the agreement for my policy stated that they could not bill the patient in this case.

Now that I have Medicare, there are new possibilities and also new problems.  I am in a rural city, so that is a problem.  Quite a few of the local doctors who used to take Medicare have bailed on the system. Most all of the doctors who take Medicare around here are not taking new patients.  Funny thing is my old doctor I already have does take Medicare.  If I could only trust him now, I would not have a problem.  How to find a doctor who takes Medicare in an area where doctors are too much in demand to be taking new patients?  Sometimes it takes luck.

Our local weekly paper does a “Best of” promotion every year.  In the issue showcasing the winners, I was surprised to see that the doctor I planned to abandon had been voted the “best” in the area.  Not only that, the medical group of which he is a member came in second place for "best medical group."  It is possible I could have switched doctors and stayed in that group, but I thought it might be weird to see my old doctor and have him realize I was not there to see him.  Plus, I believe him being part of that group was what changed him. When I started with him, he was on his own and took the time to let you think anyway that he really cared about the patient.  Since joining that group, he has seemed more hurried and less attentive to me anyway, evidently not to those who voted in the winner as “best doctor."

Who won as best medical group?  This was a group I had not really heard of. But, along with the write-up, there was an advertisement for a doctor who was part of that group and it mentioned that he was taking new patients.  I dropped by for information, and they do take Medicare patients.  I am in.  He is a Family Medicine/Sports Medicine specialist, so he might be just who I need to take over my overall issues.  We shall see.  Next week I have my patient history appointment. If he ever tells me he has to scoot, I am so out of there.      

Leg pains and forget what I said years ago

I have to say that I am not enjoying this anymore.  Not that I ever was. But, recently my legs have been bothering me.  It is hard to even sit here typing. They both ache. Walking sometimes is hard. If I have managed to fatigue either of them it is like walking with the proverbial rubber crutch.  I must look like one of those poor people that folks see tottering along in old age. Well, I am old, but not that old yet.  This certainly is a new wrinkle in something that is supposed to only impact shoulders.   So- We have weakness to the point of falling, but not quite yet.  Luckily this usually is only one leg or the other. If both went at the same time, I would be down for the count.  Pain is bearable, but a constant reminder of something that is not right down there.  It starts at lower back almost to my butt and runs down to hips and knees.  Standing makes it worse. Usually sitting is better unless it is as I am now with a desk chair and arms extended to keyboard.

And the arm still bothers me at night trying to sleep.  Actually now that I say that, turning from one side to the other is harder again, and staying any time on my back irritates that achiness.  Oh well.  It is not like I Have to get up and go to work. But, it is harder to get around and stay out doing anything at this point.

That brings up another issue.  I ran into someone recently who asked me if I thought I identified with the disease too much.  I know I mentioned here before that I was trying not to do that- some mumbo-jumbo about not “being the disease.”  I think it is good to try to keep that attitude.  It is very hard to do it with a condition that is chronic, or that is constantly evolving as it cycles through you.  Sure, I do not go up to someone and introduce myself “Hi I am Joe Blow and I have HNA.”  But, there are few times in a day that I am not thinking about it in some way.  If not in a cycle of pain, it finds other ways to remind me it is there.  If I get complacent and forget about it for a while, I usually end up dropping something or hurting myself trying to pick up something that is way too heavy and I should know better than to attempt at this stage.  So, to that person (if you ever make it to the blog and read this) I guess I do identify with it a bit too much- maybe more than I would ever admit.  But, it makes itself hard for me to ignore it.  Now, I really do have to go. Sitting here just is no fun anymore.

Hereditary Neuropathies of the Charcot-Marie-Tooth Disease Type (Includes HNA)

Maybe I gave up on CMT too easily earlier in the process. I had seen earlier that there was a subset of CMT refered to as “Hereditary neuropathy with predisposition to pressure palsy”, but I do not remember seeing that they went on to describe HNA as a subset of that. Maybe it is possible to have both HNA and CMT because it appears here at least that the two are related as described.

Form this website:

Hereditary Neuropathies of the Charcot-Marie-Tooth Disease Type

http://emedicine.medscape.com/article/1173484-overview#aw2aab6b3


“Neuritis with brachial predilection/hereditary neuralgic amyotrophy/hereditary brachial plexus neuropathy
Dreschfeld in 1886 may have been the first to recognize this condition when he described a woman with 3 episodes of painful arm weakness, whose sister had experienced 7 such attacks. Jacob et al in 1961 described in 7 patients of 2 unrelated families 14 similar episodes of recurrent brachial neuritis with incapacitating pain, weakness, wasting, depression of reflexes, and sensory loss. The legs were involved, and arm involvement was severe.[20] In 1973, Guillozet and Mercer described a similar condition in 3 generations of a family.[21] At times, the lower cranial nerves and sympathetic nervous system are involved as well.

HNA is an autosomal dominant form of recurrent focal neuropathy. Individuals experience episodic brachial plexus neuropathy with weakness, atrophy, and sensory disturbances, preceded almost always by severe pain in the affected arm. Age of onset is in the second and third decades of life and rarely in the first. Recovery is usually complete and begins weeks to months after the onset of symptoms. Recurrent episodes may affect either arm. The right arm is involved more often.”

Magnesium supplements or real food?

I have talked about using a magnesium supplement in prior posts. Every once in a while I will stop taking it to get a reality check of a sort. There is no sense in spending tons of money for a supplement if real world eating is working to supply the missing magnesium.   So, I was surprised recently when after stopping the supplemental magnesium, I felt fine after a week or so.  What is different?  Getting back to basics, I started eating more peanut butter almost daily.  This is not a lot as it turns out.  Usually it amounts to a couple of tablespoons of pretty good quality (not Jiff for example) peanut butter- the kind that is just ground peanuts a bit of salt, etc that you have to mix to get the oil blended back in.  It turns out; peanuts have a high amount of magnesium.  Cashews also work, and have more magnesium, and a bit better than that would be almonds.  If you prefer real food to supplements, it is an easy add and probably cheaper in the long run.  

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.