Pushups return, and did magnesium cause weakness?

Hi again to anyone that sees these posts.

I have been absent. Other things take precedence, at times. One thing I have talked about in the past is that magnesium has helped me, at least during and right after the attacks. It, for me anyway, helped to tone down the twitches and leg jerks that I had. I am going to suggest now that you watch out about taking it long term. Do breaks from it from time to time, to see if it is still helping or like I think happened to me, started to cause me more harm than good.

I have talked about my ongoing weakness. Some HNA sufferers report ongoing weakness and breathing difficulties. I had all of that. I never even thought about it at a certain point. It had become part of who I was. The weak guy over there who sits around while everyone else moves on with their lives. That was me. Maybe you are that person too. Or maybe you know someone like that. 

Since my attack, I have taken magnesium religiously. I have taken my own advice from time to time, and have stopped it for a week or two, until I would start to feel those familiar twitches start up again. Or I might feel tightness in general as my muscles tensed up. Magnesium is good to ease those things. It made them go away for me. And I could never stop taking it for long. It did seem to help. But, I had no idea that it also could be adding to my weakness even at the dose I was taking. I had no clue until the most recent time that I stopped.

It has been about a week now since I stopped my morning magnesium pill. And I feel so much better now. I fell less shaky in just doing everyday tasks. My breathing has improved. A couple of days ago, I tried to do some pushups. And I was amazed that on the first try, I could do 10.

Those 10 pushups were a bit shaky, but I was amazed that it was 7 more than I had been able to do for the longest time. So a half hour later, I tried again and did 20 with no shakiness. A half hour later I tried again and did 20 more. The next morning I did 15 and a bit later did 25 more. And now, for the first time in a very long time, the muscles in my arms are actually sore from that exertion. It feels amazing. I have to admit, I thought my doing any sort of exercise ever again, was a pipe dream. I felt like I was aging in an accelerated way with this disease to blame. And now I feel like I have part of my life back. Maybe because that magnesium is getting out of my system.

I know it has its place. I may use it again if I am in an attack. But, I feel like I will never just blindly take it just because I think it has helped in the past. After a while, at least in my experience, that help goes sideways and becomes more of a hindrance.

So, take it but watch out for possible problems of long term use. It might make you feel better at first, but it also can have opposite impacts in the longer run.

And maybe, it is all a coincidence and at some point my return of strength will go away, magnesium or not. 

I will let you know.    .  

3 things the chronically ill wish their loved ones knew

This is from Psychology Today



http://www.psychologytoday.com/blog/turning-straw-gold/201405/3-things-the-chronically-ill-wish-their-loved-ones-knew

Catching up on me and where I have been recently

This all goes on and on and on. I used to hold out hope that maybe I would eventually get some relief from the weakness. I know now that this nerve fatigue caused weakness will be with me for the rest of my life. It has gone on too long to hope that strength will ever return, even in a minor approximation to what I used to have, or even what may be normal for someone of my age.

A couple of months ago, I had tenderness in the right side of my neck, which quickly seemed to spread weakness down my right arm again. This followed the now more normal feeling path down my body and into my left leg. For a few days I had to swing my left leg a bit more than normal just to approach a normal gait. I took prednisone (10 milligrams a day) for a bit more than a week. During this time I was very shaky, and finally got some relief of that by resuming magnesium supplements.

Things are a bit more stable now, but I get fatigued much more quickly than ever before. If I push that and try to work through the fatigue, it almost makes me feel sick to my stomach. I know it is a reaction to the stress my body is feeling, and there is no reason to actually physically get sick, but it feels that way none the less. The only way to make it better is to rest.

That is perhaps the worst part of this disease for me. It is that it makes you feel like you are not worth anything. I do what I can physically do, and then I have to quit. I have to quit and then hope that those around me will understand why I have to stop working.

I know that my body has not ever been what most people would have known as being close to normal strength and endurance. In that, I feel like I was cheated out of a normal life.  And that makes me feel bad too since I know that there are others who have had it much worse with their lot in life than I ever had. I have no reason to feel this way. I am still alive.  No part of this will ever kill me. I only miss feeling like I was normal in even a small way. I miss that when someone I love needs me to help them, that I am limited as far as what help I can provide. This can wear you down after so long, even knowing that it is not life threatening, and knowing that there are those people in my life that try to understand, and who do not judge me based on my inabilities.

14,000 page views and counting. . .

About a year ago I mentioned passing the 10,000 page view milestone.  Now this little blog is at 14,000.
Time flies when you are having fun?  I have to admit again, there are much worse afflictions out there to have to deal with.  I am fortunate that this one is simply a pain in the arm- or neck (or any other place) as the case may be.  The weakness is irritating.  It can be infuriating.  The pain can be debilitating.  I have been luckier than most with that.  My pain so far is easily managed.  I miss being able to do things.  And I miss being able to not think about how to do the things I can do before trying them.  But again, it is not the same as what many I know have gone through with, say cancer to mention one.  Other than the possible involvement with the phrenic nerves, there is little that approaches being life threatening about PTS/HNA.

When I started this in 2009, there was very little out on the web about HNA or PTS- at least as far as how it could impact people in real life.  Now it seems quite different.  There may still be the out of date information, but there are more places that HNA/PTS patients can go to talk to others about their own issues and how they deal with them.  If I have been any help to any of you, that makes it easier for me.

Off-Label uses for Gabapentin-

I had stopped taking gabapentin to check pain levels, and found that there was no longer the pain I had previously.  I decided to stop for a while. No need to keep taking it if the pain was not there, or so I figured.  

A couple of weeks after stopping, I noticed that I was shaking again.  I had not really thought of it, but my shaking had diminished while I was on gabapentin.  I started it up again, and within a few days the shaking had diminished again.  My tremor had also subsided a bit.  Further research on Gabapentin revealed that so called “off label” uses for gabapentin show a reduction of spasticity in multiple sclerosis. 

As seen, spasticity relates to muscle tone problems causing tightness and inability to relax muscle groups, related to repeated damage to myelin sheaths of nerves.  So, either it is also helping the tightness of Neuralgic Amyotrophy myelin sheath damage, or I have something else going on.  

Physical Therapy is working- Shoulder is "thawing out"

Well, with the help of physical therapy three times a week and stretching on my own in between appointments, I am slowly getting range of motion back to my right arm. I am sure the orthopedic doctor who gave me the shot of cortisone will be disappointed at that- assuming I do go back to see him.  What I have found is that the muscles of my shoulder had allowed it to get into a position that stopped it from moving to normal range of motion.  With concentrated effort to move my shoulder prior to stretching, I was able to get it past the previously frozen limits to some extent.  And my Physical Therapist has been getting it to go even further in the manual stretching portion of the treatments.   It is slow progress, but it is working out of it.

Sometimes a nodule is just a nodule- back to HNA/PTS discussions

After a biopsy (close to $3,000) which was inconclusive, and a CT scan at around $950.00, it has come to light that the nodule in my thyroid is benign.  Both of these tests, plus around $800 for blood work, are things my old insurance would have not helped much as far as payment- and as such, I would have declined them.  At least now, I can know for sure it is OK to not do anything right away and to monitor the growth over time, for unwanted or unexplained growth.

So for now, I can get back to concentrating on the HNA question. I think it is really a done deal as far as the hereditary part of the NA.  I have clearly had another attack at the end of last summer concentrated to right shoulder as far as worst symptoms go.  This was alluded to in recent posts, and right now is better overall as far as pain goes, but still I have lingering pain in right shoulder, and have to at times use left arm to support the right in daily use.  It was/is clearly nerve related pain, responding to prednisone long term, but not even touched by any amount of ibuprofen. Sleep is an issue again.  Any time on my right side results in pain that wakes me up.

Weakness continues, but it is not quite as bad as it can be.  I really can not even think of trying push-ups until my right arm recovers a bit. Also with this new attack, I am having a bit of vertigo and nystigmus at times. In the past I also went through a short period of this, and it passed eventually.  This time, it is a bit worse and the lengths of time of the "spells" seems to be longer. It makes me wonder again about other possible issues, but I also know that HNA can produce periods of vertigo. And I know that others with HNA have reported dizziness at times.  I will just have to be more careful until it gets better.

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 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.      

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.