I have mentioned this before. Whatever the cause of your own PTS, or NA, or HNA, or whatever of the many names this goes by you choose to use, you may not have any outward appearance that you have anything abnormal going on. This can be a problem going to see doctors because they may not really believe you when you tell them how you feel. At least they should take the time to look at you and see that there are actual physical things related to PTS that can be seen that are not right and indications of an overall problem.
Your friends and associates may be harder to convince or deal with. And, maybe you do not want them to think of you as having issues, so you try not to show them how this impacts you. You try to do things that you know you have problems with. Sometimes you fail, and they do see just what the toll of PTS is on you both physically and emotionally. Recently one such occasions lead to a meltdown for me, and a “I had no idea” from a person very close to me who I had thought understood my limitations.
She had told me long ago that I hide the physical limitations of this syndrome very well and maybe that is one reason doctors tend to think I am better off than I am. I am not trying to hide anything. I guess I take it for granted though that someone close to me can always tell when I am pushing beyond what I should be trying to do.
The truth is that PTS/NA is never far from my thoughts in everyday life. Everything I do every day is a reminder of what I have lost, or have had to make adaptations to in an attempt to appear “not sick”. It is true this may not life threatening illness, but it still is not easy to deal with at times. It can be rough on you when you are not able to do everyday things that others take for granted. This can be as simple as not being able to write more than a few words legibly to doing simple chores around the house. Because you can do these things, others can forget you have had to adapt yourself to be able to do them.
If you know someone who is working through this, be understanding.
Monday, May 17, 2010
Thursday, May 13, 2010
Comparison of NA vs. HNA
Most websites on PTS limit the involvement to that of the shoulder girdle, and usually suggest there is only one attack. The differences in HNA and NA attack sites are discussed by Nens van Alfen, MD- here:
http://brain.oxfordjournals.org/cgi/content/abstract/129/2/438
“HNA patients had an earlier onset (28.4 versus 41.3 years), more attacks (mean 3.5 versus 1.5) and more frequent involvement of nerves outside the brachial plexus (55.8 versus 17.3%) than INA patients, and a more severe maximum paresis, with a subsequent poorer functional outcome.”
I have mentioned earlier on all of the potential plexus sites which can be impacted by HNA, but here is a distribution found on Gene Reviews-
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=hna
“While the shoulder and arm are primarily affected by attacks in HNA, other sites that may also be involved in an attack include the following:
• Lumbosacral plexus in ~33% of attacks
• Phrenic nerve palsy in 14% of attacks; may cause orthopnea, respiratory distress and sleep disturbance
• Recurrent laryngeal nerve in 3% of attacks; may cause vocal cord paresis resulting in hoarseness and hypophonia
• Facial nerve or other cranial nerves (rarely)”
While there is a genetic test to determine whether you have HNA or NA, this would seem to suggest that if you have had more than one occurrence of NA, or if you have had involvement of other plexus sites, at least statistically you may have more chance of having Hereditary Neuralgic Amyotrophy.
http://brain.oxfordjournals.org/cgi/content/abstract/129/2/438
“HNA patients had an earlier onset (28.4 versus 41.3 years), more attacks (mean 3.5 versus 1.5) and more frequent involvement of nerves outside the brachial plexus (55.8 versus 17.3%) than INA patients, and a more severe maximum paresis, with a subsequent poorer functional outcome.”
I have mentioned earlier on all of the potential plexus sites which can be impacted by HNA, but here is a distribution found on Gene Reviews-
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=hna
“While the shoulder and arm are primarily affected by attacks in HNA, other sites that may also be involved in an attack include the following:
• Lumbosacral plexus in ~33% of attacks
• Phrenic nerve palsy in 14% of attacks; may cause orthopnea, respiratory distress and sleep disturbance
• Recurrent laryngeal nerve in 3% of attacks; may cause vocal cord paresis resulting in hoarseness and hypophonia
• Facial nerve or other cranial nerves (rarely)”
While there is a genetic test to determine whether you have HNA or NA, this would seem to suggest that if you have had more than one occurrence of NA, or if you have had involvement of other plexus sites, at least statistically you may have more chance of having Hereditary Neuralgic Amyotrophy.
Tuesday, May 4, 2010
When is a little magnesium too much magnesium?
Well, I am confused about this myself.
I had started off with regular magnesium and it had helped me keep the tremor and shaking under control quite a bit initially. Then it seemed like I hit a time where it was not helping. I switched to chelated magnesium and that seemed to help again. It may be that I did not really need to go to the chelated form after all. Maybe my body was just trying to tell me it needed a rest from the magnesium. I say this because a few days ago, I again started to shake and have tremors even while taking the magnesium. What the? This time I did the one thing I had not tried the first time. I stopped taking magnesium.
The first day without the magnesium supplement, the shakes diminished. And the bit of tremor I had begun to feel also went away. And the twitching (mainly felt in my fingers this time) also diminished. It has now been three days and the initial lack of symptoms has been maintained. And my strength is about the same- meaning good for this weird period of my life, but not what it was when I was way younger. Why is this? Why is the addition of magnesium a good thing and then it becomes a bad thing? This is when it would be nice to be my own doctor so I could explain the intricacies of magnesium absorption and what needs to happen to keep it balanced.
Maybe it all was a coincidence and magnesium never did help me at all. Maybe I got better on my own and it just happened that I had started taking magnesium at that time. And maybe it was coincidental that low magnesium could have accounted for a majority of the symptoms I had been having. That does seem like a bit of a stretch.
Maybe the level of magnesium in my normal daily food has increased, and the supplemental magnesium just pushed me over the edge to the point it was becoming a detriment. Too much magnesium can also cause weakness and other symptoms that I was trying to get rid of. It is complicated and I guess that is why doctors get the big bucks. Not that my doctors ever suggested magnesium could help or hurt. At the dosage I was taking, it should not have been a problem.
I go back to Myasthenia Gravis (MG). One thing that comes up on websites dealing with MG is that if you have Myasthenia Gravis you should not take magnesium supplements because the extra magnesium can make you weaker than you are already. I know that MG tends to cycle as other immune diseases can, so it may be that when MG is in its full swing, you may be more sensitive to the impact of magnesium. And when the MG has abated a bit, magnesium could help in the lessening of other symptoms.
What do I know?
Added 05/17/2010
I had been trying to use less magnesium, thinking maybe I had been taking too much of the chelated form. And I had been slowly getting worse. My pushup count was dropping to around 10 or fewer. My back was very shaky again.
Today, I doubled the dosage of the chelated magnesium, and started to feel a bit better fairly quickly. So, maybe my assumptions about increased absorption of chelated magnesium should not have lead to a conclusion that a lesser dose was needed. If I take two, I feel better and my pushup count is back up to 20.
I had started off with regular magnesium and it had helped me keep the tremor and shaking under control quite a bit initially. Then it seemed like I hit a time where it was not helping. I switched to chelated magnesium and that seemed to help again. It may be that I did not really need to go to the chelated form after all. Maybe my body was just trying to tell me it needed a rest from the magnesium. I say this because a few days ago, I again started to shake and have tremors even while taking the magnesium. What the? This time I did the one thing I had not tried the first time. I stopped taking magnesium.
The first day without the magnesium supplement, the shakes diminished. And the bit of tremor I had begun to feel also went away. And the twitching (mainly felt in my fingers this time) also diminished. It has now been three days and the initial lack of symptoms has been maintained. And my strength is about the same- meaning good for this weird period of my life, but not what it was when I was way younger. Why is this? Why is the addition of magnesium a good thing and then it becomes a bad thing? This is when it would be nice to be my own doctor so I could explain the intricacies of magnesium absorption and what needs to happen to keep it balanced.
Maybe it all was a coincidence and magnesium never did help me at all. Maybe I got better on my own and it just happened that I had started taking magnesium at that time. And maybe it was coincidental that low magnesium could have accounted for a majority of the symptoms I had been having. That does seem like a bit of a stretch.
Maybe the level of magnesium in my normal daily food has increased, and the supplemental magnesium just pushed me over the edge to the point it was becoming a detriment. Too much magnesium can also cause weakness and other symptoms that I was trying to get rid of. It is complicated and I guess that is why doctors get the big bucks. Not that my doctors ever suggested magnesium could help or hurt. At the dosage I was taking, it should not have been a problem.
I go back to Myasthenia Gravis (MG). One thing that comes up on websites dealing with MG is that if you have Myasthenia Gravis you should not take magnesium supplements because the extra magnesium can make you weaker than you are already. I know that MG tends to cycle as other immune diseases can, so it may be that when MG is in its full swing, you may be more sensitive to the impact of magnesium. And when the MG has abated a bit, magnesium could help in the lessening of other symptoms.
What do I know?
Added 05/17/2010
I had been trying to use less magnesium, thinking maybe I had been taking too much of the chelated form. And I had been slowly getting worse. My pushup count was dropping to around 10 or fewer. My back was very shaky again.
Today, I doubled the dosage of the chelated magnesium, and started to feel a bit better fairly quickly. So, maybe my assumptions about increased absorption of chelated magnesium should not have lead to a conclusion that a lesser dose was needed. If I take two, I feel better and my pushup count is back up to 20.
Friday, April 16, 2010
My left arm- I feel like I have already seen this movie
All along, I have thought NA/HNA- what is it anyway? Was just impacting my right arm, and most sites agree it impacts mainly the right arm and shoulders. But I always knew my left shoulder was just not as bad. Well, it seems to be changing of late. I had mentioned the ache I had a while back. That went away. But in its place I have been feeling tenderness in the biceps tendon.
This is a weed whacker issue also since I used it just the other day again. During use, and for a couple hours later it was OK. Then the tendon started to become inflamed and my arm was shaking during any use. And I now was having trouble lifting my arm at all. It started to feel all too familiar. And this was not so much how my arm and shoulder felt preceding my winging right scapula, but it was a similar sensation as I had preceding my thumb and index finger problems. And the ache I had also involved my thumb. This makes me wonder. And it makes me feel like I have to be more careful or I will end up with two hands that are not much good.
This is a weed whacker issue also since I used it just the other day again. During use, and for a couple hours later it was OK. Then the tendon started to become inflamed and my arm was shaking during any use. And I now was having trouble lifting my arm at all. It started to feel all too familiar. And this was not so much how my arm and shoulder felt preceding my winging right scapula, but it was a similar sensation as I had preceding my thumb and index finger problems. And the ache I had also involved my thumb. This makes me wonder. And it makes me feel like I have to be more careful or I will end up with two hands that are not much good.
Thursday, April 15, 2010
More on Chelated Magnesium
Here is just a bit more about magnesium and the differences between chelated and regular.
For the regular non-chelated form, I was taking two capsules a day to get to the 600 mg total dosage they recommend. If I take that amount and get a typical absorption rate of 10% for the non-chelated magnesium, I end up with a total absorption of 60 mg and a wasted amount of 540 mg left to cause havoc with my lower digestive tract.
For the chelated form I now have, it has a total of 150 mg of elemental magnesium per capsule. Right off you might think it is a bad idea since you would have to take four to get to 600 mg. But wait. If your typical absorption rate is 40% for the chelated form, you can get by with taking only one capsule to get to that 60 mg dosage. That leaves you with only 90 mg of wasted magnesium in your digestive system. It is still wasted, but it is so much less than the amount wasted with the non-chelated forms.
And there is another difference. With the non-chelated form I always had just a slight residual of symptoms at times. The tremor initially was gone completely, but the twitches were always there just in the background. If I could have done so, I would have tried just a bit more magnesium. But I was already at the recommended dosage and I did not want to push it any higher for obvious reasons. With the chelated form, I am just taking the one capsule a day and it is totally controlling the twitches. And that slide backwards I had mentioned just previous to this entry is reversed. So maybe the absorption is a bit better than 40% or the absorption of my non-chelated form was a bit less than the 10% rate I was assuming.
Chelated is better. Don’t waste your time on anything less than that.
For the regular non-chelated form, I was taking two capsules a day to get to the 600 mg total dosage they recommend. If I take that amount and get a typical absorption rate of 10% for the non-chelated magnesium, I end up with a total absorption of 60 mg and a wasted amount of 540 mg left to cause havoc with my lower digestive tract.
For the chelated form I now have, it has a total of 150 mg of elemental magnesium per capsule. Right off you might think it is a bad idea since you would have to take four to get to 600 mg. But wait. If your typical absorption rate is 40% for the chelated form, you can get by with taking only one capsule to get to that 60 mg dosage. That leaves you with only 90 mg of wasted magnesium in your digestive system. It is still wasted, but it is so much less than the amount wasted with the non-chelated forms.
And there is another difference. With the non-chelated form I always had just a slight residual of symptoms at times. The tremor initially was gone completely, but the twitches were always there just in the background. If I could have done so, I would have tried just a bit more magnesium. But I was already at the recommended dosage and I did not want to push it any higher for obvious reasons. With the chelated form, I am just taking the one capsule a day and it is totally controlling the twitches. And that slide backwards I had mentioned just previous to this entry is reversed. So maybe the absorption is a bit better than 40% or the absorption of my non-chelated form was a bit less than the 10% rate I was assuming.
Chelated is better. Don’t waste your time on anything less than that.
Tuesday, April 13, 2010
Regular vs. chelated Magnesium
Recently as mentioned it seems I had hit a plateau as far as how magnesium was helping me long term and that maybe I had actually started a slow decline off of that previous level. And as ever I have done in the past, I started wondering why. It occurred to me that maybe it was the type of magnesium I was taking. I was taking just a run of the mill magnesium at around 600 mg daily.
This is beneficial in the short term since I really was down on the magnesium input to my system. But, the type of magnesium at that dosage was also making my digestive system have problems that may in fact have been stopping absorption of other foods, and the magnesium I needed. Enter chelated magnesium.
It turns out that no matter how much my natural food store employees were trying to tell me I had already had chelated magnesium, they were wrong. I just had regular unadulterated elemental magnesium which has an absorption rate of no better than 4% while a chelated form can be absorbed at close to 40%. After the switch, it already seems that I feel better again. In order to be chelated, it has to have it on the label. And even though chelated forms appear to be lower in total dosage, you get more of it.
From http://www.restlesslegsyndromecure.com/cause.html which talks about restless leg syndrome. . .
“Magnesium causes relaxation of the muscles in the entire body including the legs. A lack of Magnesium causes the muscles of the legs to tense up. So the solution is to take Magnesium. Make sure to take a Magnesium that is easily absorbed. Take Magnesium Glycinate or Magnesium that is chelated (the absorption rate is 40%). Do NOT take Magnesium Oxide (the absorption rate is only 4%). Take 400 mg/day - 1000 mg/day of Magnesium being careful to spread it out over the entire day. The Magnesium may cause loose stools since it relaxes the muscles of the intestine. So if you get loose stools just cut back on the dose of Magnesium. The Magnesium will relax the muscles of the leg and reduces the urge to move your legs. Typically, health food stores have a high quality Magnesium. The common run of the mill department store magnesium is magnesium oxide and will NOT be absorbed.”
This is beneficial in the short term since I really was down on the magnesium input to my system. But, the type of magnesium at that dosage was also making my digestive system have problems that may in fact have been stopping absorption of other foods, and the magnesium I needed. Enter chelated magnesium.
It turns out that no matter how much my natural food store employees were trying to tell me I had already had chelated magnesium, they were wrong. I just had regular unadulterated elemental magnesium which has an absorption rate of no better than 4% while a chelated form can be absorbed at close to 40%. After the switch, it already seems that I feel better again. In order to be chelated, it has to have it on the label. And even though chelated forms appear to be lower in total dosage, you get more of it.
From http://www.restlesslegsyndromecure.com/cause.html which talks about restless leg syndrome. . .
“Magnesium causes relaxation of the muscles in the entire body including the legs. A lack of Magnesium causes the muscles of the legs to tense up. So the solution is to take Magnesium. Make sure to take a Magnesium that is easily absorbed. Take Magnesium Glycinate or Magnesium that is chelated (the absorption rate is 40%). Do NOT take Magnesium Oxide (the absorption rate is only 4%). Take 400 mg/day - 1000 mg/day of Magnesium being careful to spread it out over the entire day. The Magnesium may cause loose stools since it relaxes the muscles of the intestine. So if you get loose stools just cut back on the dose of Magnesium. The Magnesium will relax the muscles of the leg and reduces the urge to move your legs. Typically, health food stores have a high quality Magnesium. The common run of the mill department store magnesium is magnesium oxide and will NOT be absorbed.”
Monday, April 12, 2010
The other shoulder
Off and on recently I have had things going on with what had been my un-impacted left shoulder. I say un-impacted even though my left scapula does show sign of slight winging. What has been happening is that I feel a dull ache from my scapula that feels like it is traveling down my arm to my left thumb. During these times, my arm is about useless even though the pain is not what I would call bad in any way. At least it is not bad compared to what I know it could be.
So, I am not sure what it means, if anything. I have had no pain recently in the left side of my neck. But, I do continue to have left sided headaches periodically, as I have had since this all started in 2006. I know my doctors would just say it is due to overuse. But, what should I do about that?
So, I am not sure what it means, if anything. I have had no pain recently in the left side of my neck. But, I do continue to have left sided headaches periodically, as I have had since this all started in 2006. I know my doctors would just say it is due to overuse. But, what should I do about that?
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