On Facebook- Parsonage-Turner Syndrome Support Group

Just wanted to let you know- Maybe I was the last to know- that there is a support page for PTS on Facebook. Once you join Facebook, search for "Parsonage-Turner Syndrome Support Group". Good info, and more people out there to share stories with.

Yard work and no shaking

I have run our weed whacker for the first time this season, and I have to say that I experienced no tremor or muscle shaking at any time during or after the usual circuit of the yard. I even kept going and wound up a 100 foot extension cord wrapping it over and around my left arm, then mowed the lawns front and back- and then cut up some branches to get rid of.

Of course, I did manage to whack my left ankle. this is not a nylon line weed whacker. No. I had to go and replace that with two plastic blades. I always wondered what would happen if I miscalculated how close my leg was to the working end of this contraption. Now I know. Nothing major damage-wise, but I do not recommend it.

So- what tremor? Just add a bit of magnesium, and it seems to be gone- for me at least.

Magnesium Deficiency and H1N1 shots related to Parsonage Turner Syndrome?

I notice in reports that some have searched to find my blog with these queries. Do not worry, that is all I can see about the site. I do not see any information about any specific users. . .

Anyway, about the queries-

Flu shots a cause for PTS?

I have never seen any evidence specifically linking any particular injection to Parsonage Turner Syndrome. But, I have seen that Brachial Plexus Neuritis (one name PTS can go by) has at least been linked to certain injections, among them influenza injections. Sites I have seen do not say injections are a direct cause, but only that in certain cases, the only thing that had happened recently to a sufferer is that they listed having had a flu shot. See this site for examples of causes- if you have not already found it. http://emedicine.medscape.com/article/315811-overview

Magnesium Deficiency linked to PTS?

Magnesium Deficiency is a possible culprit in many diseases as I have alluded to in the blog previously. It does cause overall weakness, tremors and twitching and a general feeling of malaise- like you are just winding down to minimal function. In my opinion, if you also have PTS or NA, or even HNA, the weakness associated with PTS can be additive if you have magnesium deficiency on top of it. It was for me at least. But, as a cause, I do not think magnesium deficiency would be a direct cause for PTS in any of its other names. PTS causes winging scapula and other distinct muscular losses, and may cause a general weakness of the impacted limbs. But, low magnesium would produce weakness all over the body by comparison. Also, once you correct the magnesium deficiency, overall strength improves quickly, along with a cessation of other related symptoms like twitches and tremors. Even at that though, my scapula is still winged, and my right thumb is still partially paralyzed.

Capsules vs. Tablets for magnesium. . . It does make a difference

It seems that the type of magnesium supplement is important as far as how effective it will be. At least this is true for me. I had started out and had been successful using capsules. That is the ones that are a clear material that are packed with powdered form of the ingredients. A couple of days ago, I tried a tablet (hard packed) that also included calcium and vitamin D. After a day of that, I was starting to slide a bit back into tremor and shakiness. I was also getting a bit tense and feeling a bit over taxed again. I switched back to the original capsule form and I have improved again. My guess is that the capsule format is quicker to load into your system because the capsule material dissolves quicker than the tablet. I suspect the tablet was not dissolving until it had passed beyond. . .

Parsonage Turner Weakness-Strength update

Just a quick update about exercises I have been doing-

The last few days of pushups, I have felt almost like I could go beyond 25. Today, I acted on that and pushed it to 30. I have got to think that I have never done 30 at one time before in my life. I know I had only rarely done 25 even in my earlier years(upper body strength has never been easy for me). And, if anyone is concerned I am only doing pushups I am back to 20 sit-ups and walking or doing stationary bike stuff and other daily exercises for other areas.

Prior to magnesium being added to my daily vitamins I had stamina issues walking around the block or biking, and I could do only 8 sit-ups (shaky ones at that). And 20 minutes or so after trying those 8 sit-ups, I could not do even one more. The first time I tried to do sit-ups after adding magnesium, I did 20 and could do 10 more after resting a few minutes. I tell you, this stuff is helping me get back into the shape I need to be in to get my NA ravaged shoulders stabilized.

We know that NA/HNA does cause some weakness, and that this can linger for a couple of years at least. In my case it lingered for around 4 years before I realized I was losing too much muscle mass. There may be things going on here that I do not know about, but I have become a fan of this one supplement. I take a few daily supplements, but magnesium is the only one that I can tell a difference in how I feel if I miss a dose. I would suggest if anyone has more weakness than they think can be attributed to NA/HNA, to try a good magnesium supplement.

How much is too much exercise?

Hey, that is not the real question at all. The question is what happened to the magnesium that I used to get in my diet without the supplements? I have been doing at least 25 pushups daily, and usually with other upper body exercises to try to regain the arm strength I had a few years ago and had lost. I would almost bet money that if I stopped the magnesium supplements, I would go back to being a shaking mess. I am not going to do it. First, no one would pay me anything when I won the bet. And I feel so much better I do not want to stop it just to prove what I already know.

How does this relate to NA? Well, while I had the severe weakness, I could not effectively exercise. Thinking weakness was related to NA made me think the NA is more involved than any website suggests- or more involved than any doctors I had seen who knew NA at all- which is rare. I was convinced the NA was worse than anyone knew, or that I had some other disease that could be life threatening. Maybe that later thing is still true- but that could happen at any time. Wasting away getting weaker was just the start of what could have been the start down the proverbial slippery slope. The weaker I got, the sicker I thought I must be. The sicker I thought I was, the less I tried to do, and the weaker I became. This is all why I jumped into a round of new doctor visits towards the end of last year. Someone had to see what was happening, or I doubted I would be around much longer. Or if I was here, my quality of life would be close to zero.

That sounds pretty extreme, but it was feeling like I was in a pretty rapid slide towards the end of last year. My tremor was worsening. My shakes were worse. I felt weaker doing everyday things. When I felt good exercising one day, I would feel like crap the next day and not be able to do anything. I am convinced that if I had not found that page suggesting magnesium supplements could increase muscle response, I would be in pretty bad shape at this point.

And I owe it all to my doctors. No, actually they did not cure me of anything. But, they were steadfast in suggesting that there really was nothing wrong with me. They proved it. It would have been nice if they could have been better equipped to be able to suggest other things that may have helped, but they are pretty busy with other people who may be sicker than I am. I just needed to slide a bit deeper and maybe they would have taken me more seriously. It is like on House. . . You may want to have a doctor who would take all that time with you and finally cure you in 60 minutes on Mondays at 9 PM. But, I have also noticed that he rarely is right the first few times, and he pretty much has to kill a patient at times to discover what really is wrong with them.

My advice to anyone who is up against a wall with doctors is to not give up. And if the doctors have given up on you, keep looking on your own. There is a wealth of information out here. It might take you what feels like forever to wade through some of it- but the answer you need may be on that next page you look at. But use caution too. There is also a lot of crap out there that is useless. And if you find an answer, your doctor may feel threatened if you suggest it was found on the internet. Get better at using search engines. Refine your searches and look at as many links as you can. If you find something promising, refine your search to include that. You might find your own key that will unlock your answer- or give you something else to mention to your doctor the next time he can spare ten minutes of an hour appointment to talk to you. I now have two things to ask about next time. First, why does magnesium make me better? And is it possible the lack of magnesium in my diet could explain why I got glaucoma? It is funny that the last time I saw my regular doctor; he even suggested to me that it all might have to do with something in my diet. It is funny because if I am right, it turned out to be a lack of something in my diet.

Link to Glaucoma found?

Well, this is not a direct link from HNA/NA to glaucoma, but there does seem to be at least an indirect link between low magnesium and glaucoma. If one aspect of low magnesium leads to blocking of glutamate receptors, which are excitatory neurotransmitters of the central nervous system. It appears that this can be linked to many diseases. The list includes ALS, Huntington’s, MS, Parkinson’s and others. (see http://en.wikipedia.org/wiki/Glutamate_receptor)

On the list is glaucoma, a disease I know I now have, and those others I could have but would rather think I do not. I used to think it was a coincidence that I was diagnosed with glaucoma at around the same time my muscles got so weak. I thought it was from HNA/NA- but now I think this is also from low magnesium- or whatever caused that.