Just a short update- I am about as stable as I guess I am going to get for now.
Whether the weakness I on occasion experience is related to PTS/NA or not, magnesium (chelated) does help.
Whether the twitches and tremor I feel is related to PTS or not, magnesium helps keep that bearable also with no further drugs (i.e. Propranolol).
My weakness is stable at this point. I dropped in my pushups count from the 30’s to around 20 at this point. More magnesium may help get more strength, but I have to limit it at some point. I am not made of money and if I up it too much, I am sure the chelated effect will be overcome and I will cause more digestive problems than it is worth. My shoulders are too weak to pick up anything heavy. Of course, my lower back being as it is now does not help. Oh, and my upper thighs- it is all related to being able to bend and lift. . .
Doctors I know do not want to pursue my case. Hell, Doctors I do not know do not want to pursue it. I recently contacted a doctor here who I had been told was the only doctor in my area to test for and treat Lyme disease. I tried to get on with him as a new patient, and was told he was not interested in taking any patients for Lyme disease. I never told them I had it- just mentioned I had some similar symptoms but did not know what I had. I may have said this before, but I think there are too many doctors who just want to keep it all simple. Insurance companies do not want to take on “unknowns”, and doctors are really no different. I think that is one reason my most recent doctor visits ended as they did. Whoops- I did not find anything concrete that I can either throw pills at or operate on and cut out of you. That being the case, insurance will not pay for a series of tests that cannot be justified. Therefore, I will give you a medication to control the obvious physical symptom without worrying it is caused by anything more severe- nice and neat. It looks good in your chart to be neat. And your insurance will pay me for it.
I guess in order to find out more about the causes of these other possibly unrelated symptoms (unrelated to PTS?) I will have to be in worse shape. I guess in the TV show House, you have to be almost killed by incorrect treatments to find the correct diagnosis. In most real life situations, you just have to keep records of how symptoms progressed over time so when you are near death’s door you can tell the doctors who try to treat you how this all started. And they will no doubt say, “oh, if we had only caught that sooner. . . “
Wednesday, May 26, 2010
Tuesday, May 18, 2010
Lyme disease and magnesium deficiency
Long ago, a friend suggested that I may have been exposed to Lyme disease, and maybe that was why I had the symptoms I have. Well, I went to a specialist and filled out their screening tests information, and they did not find any suggestion of Lyme disease in my responses. But, there is a bit of evidence to support a link between Lyme disease and magnesium deficiency. I Googled “Lyme disease magnesium” and came up with this site among many others.
http://www.lymebook.com/lyme-disease-diet-and-supplements-vitamin-a-b-c-magnesium
From the site related to magnesium and Lyme disease:
” Magnesium: Both Lyme and Bartonella significantly deplete the body’s supply of magnesium. Magnesium is one of the most important mineral nutrients necessary for good health, and also one of the minerals that Americans in general are most commonly deficient in. The recommended daily intake of magnesium for healthy people is 400 mg per day, but the sad reality is that the average American gets about half that amount per day. The best nutritional sources include green foods, especially collards and chard (magnesium is to chlorophyll what iron is to hemoglobin), orange-colored foods, nuts, chocolate, figs, apricots, coconut, bran, oats, beans, and legumes.
Most widely known for its ability to support the health of the bones, heart, skeletal muscles, and teeth, magnesium also plays essential roles in the maintenance and repair of all body cells, energy production, hormone regulation, nerve transmission, and the metabolism of proteins and nucleic acids. It also helps to reverse muscular tension and is involved in the functioning of literally hundreds of the body’s enzymatic reactions. A lack of magnesium can also contribute to immune system dysfunction, depression, fatigue, high blood pressure, high cholesterol, gastrointestinal problems, irregular heartbeat, memory problems, mood swings, muscle spasms and twitching, and motor skill problems.
Many chronic symptoms of Lyme/TBDs are related to magnesium deficiency, and the correction of that deficiency can be very effective in relieving those symptoms. For that reason, I routinely test nearly all patients with chronic Lyme symptoms for magnesium deficiency. The problem with blood testing is that the magnesium blood test should be done on the red bloods cells and not the serum. This is because magnesium exists primarily inside of cells (intracellular, as in red blood cells), and deficiency will not be detected in fluid outside of the cells (extracellular, as in serum or plasma) until a very profound deficiency exists. If you can afford it, the best, and also most expensive, test is the blood “ionized” magnesium (performed by most large commercial labs). “
http://www.lymebook.com/lyme-disease-diet-and-supplements-vitamin-a-b-c-magnesium
From the site related to magnesium and Lyme disease:
” Magnesium: Both Lyme and Bartonella significantly deplete the body’s supply of magnesium. Magnesium is one of the most important mineral nutrients necessary for good health, and also one of the minerals that Americans in general are most commonly deficient in. The recommended daily intake of magnesium for healthy people is 400 mg per day, but the sad reality is that the average American gets about half that amount per day. The best nutritional sources include green foods, especially collards and chard (magnesium is to chlorophyll what iron is to hemoglobin), orange-colored foods, nuts, chocolate, figs, apricots, coconut, bran, oats, beans, and legumes.
Most widely known for its ability to support the health of the bones, heart, skeletal muscles, and teeth, magnesium also plays essential roles in the maintenance and repair of all body cells, energy production, hormone regulation, nerve transmission, and the metabolism of proteins and nucleic acids. It also helps to reverse muscular tension and is involved in the functioning of literally hundreds of the body’s enzymatic reactions. A lack of magnesium can also contribute to immune system dysfunction, depression, fatigue, high blood pressure, high cholesterol, gastrointestinal problems, irregular heartbeat, memory problems, mood swings, muscle spasms and twitching, and motor skill problems.
Many chronic symptoms of Lyme/TBDs are related to magnesium deficiency, and the correction of that deficiency can be very effective in relieving those symptoms. For that reason, I routinely test nearly all patients with chronic Lyme symptoms for magnesium deficiency. The problem with blood testing is that the magnesium blood test should be done on the red bloods cells and not the serum. This is because magnesium exists primarily inside of cells (intracellular, as in red blood cells), and deficiency will not be detected in fluid outside of the cells (extracellular, as in serum or plasma) until a very profound deficiency exists. If you can afford it, the best, and also most expensive, test is the blood “ionized” magnesium (performed by most large commercial labs). “
Monday, May 17, 2010
When does a little magnesium lead to more?
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.
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.
You don’t look sick. . .
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.
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.
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.
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