More tremor and twitching comments

A while back, I had noticed that my tremor had returned to particularly my right hand. This was especially noticed while holding a cup of coffee, or even later at rest after setting down the cup. Red flag, I know- at rest tremor can usually mean Parkinson’s and that does concern me. And, I have to admit, the possibility I have MS still is a concern too. So many overlapping symptoms, how do you pick what is right, or what to ignore? Is there a doctor in the house? Seriously, if there is and you would like to add your comments- or email me?

You might ask why I do not ask my own doctor, and if that concerns you- I will say “been there, done that, where is my t-shirt? “ Doctors I have run in to either do not know much about this, or are not willing to say what they really think once a test comes back. Besides that, the days of my good insurance coverage are done. My current insurance is poor to say the least, but I have to have something, don’t I?

Back to the tremor, this seems to come and go just like the twitches and- well, I was going to say my strength, but recently my strength has failed to return as it had been. I must be lazy. You know, I was just on a site NeuroTalk Support Groups where I noticed a MS sufferer talking of fatigue that got worse at the end of the day, or worse when stressed and made others suggest that she was lazy. I have gotten that too, from doctors. This is another reason I seem to not value what they think about my condition at this point. Anyway, as I was saying about tremor, it has come and gone.

First, I thought that Propranolol was helping, but no matter how I increased the dose, tremor would still break through. Then, when I dropped that I thought it had been zapped by magnesium. That worked at first and also seemed to increase my strength. Now that has stopped also. What now? Well, a couple of weeks ago during my tremor increase; I noticed pain at the side of my neck. I thought, here we go again. I thought of breaking into my prednisone stash but it is limited. I decided to first try DHEA (see http://en.wikipedia.org/wiki/Dehydroepiandrosterone). So far, I have seen the pain in my neck disappear first, and rapidly following my hand tremor. Why? Who knows? It is probably only a coincidence. But my arms also shake less when I use them. None of it makes any sense.

Glaucoma updates

I guess now new research has suggested that glaucoma is more of a degenerative nerve disease than simply an eye disease and new treatments may be directed in slowing the actual degeneration of the optic nerve. Hmm. Maybe it was not as far fetched of an idea as it seemed that my particular degenerative nerve disorder could impact my optic nerves?

http://www.nytimes.com/ref/health/healthguide/esn-glaucoma-ess.html

On my mind. . .

So anyway getting back to every little pain and soreness. . . From the start of my Oct 2006 event, I have had a pain in my mid-back area on the left side. It is about at the base of the rear ribcage area. It has been a tender spot in the years since my right scapula went south (literally). Doctors have assumed (since they know nothing of the bilateral tendencies of NA or the fact that it can involve other plexus sites) that the soreness was simply due to my body trying to rebalance itself against the losses of my right side. What has changed recently is that this tender spot is not just noticeable in movement. I feel a general ache type sensation on the left when I take a deep breath. Glancing at imagery on the web of the diaphragm location, it is at least a possibility that this tender ache type area is at least close to my diaphragm since I see that the diaphragm takes a dip down as it nears the back of the ribs. It may also just be a sore muscle that is aching now because I am taking more deep breaths that usual. Anyway, I guess if it is just a sore muscle my question would be as to why it has not gone away in more than two years. This is just another weird thing I may not ever know for sure.

One other thing that has bugged me for a number of years is my left hip. Back prior to either of my more recent events in 2001 or 2006; I had a sore left hip. In fact it was one reason I chose to get an automatic transmission car in 1999. It was just getting too hard to use a clutch with my left leg getting harder to move with ease. This also has not healed since. There have been times it felt almost better, but recently it has seemed to slip a bit. I have to lift my leg into the car. If I stand too long, it feels like my leg is just being dragged after me. I have a bit of a limp going when walking now. Some have noticed this and asked if I have leg pain. No. There is not real pain most times. It just feels weak.

Are either of these related to HNA? Since they have not healed I have to think they must be related. It bothers me. It makes my temper short. And that bothers me more. But, I do not look sick. That is all that matters to some. And I guess that bothers me even more.

Is Social Security Disability in your future?

This is something I had not considered at the start of my NA/HNA journey, but after the three attorneys I consulted during my recent Worker’s Comp process were surprised I had not already applied, I thought it worth mentioning.

One thing that you should know is that the social security folks seem to need to know that more than one limb is impacted for them to agree you are disabled by anything. That and you have to demonstrate that this impacts your ability to perform basic tasks that might be associated with paying work or just everyday living. To show this, it is important to document everything that has happened to you so you can demonstrate how this impacts your everyday life. Documentation is the key in this. My documentation amounted to a good inch thick stack of paper reports and doctor notes that go back almost ten years. They also have a list of all of the doctors I have seen and when I saw them. Social Security is free to contact the doctors you provide information for, so it is possible that their complete list of documentation exceeds what I have at this point.

That documentation should refer to impacts you have on more than one limb. The right arm by itself is not enough. The right leg alone is not enough. But if you can show that both arms are impacted or that you also have leg involvement, you will have better chances of your claim not being rejected out of hand. If a doctor anywhere in your past ever made note of a different limb being involved, make sure you have a copy of that in your file. In my case, the original mention of my other arm being involved was important, even though the conclusions this doctor came to ended up being incorrect. In my case, there was another doctor who mentioned that involvement later, so I have two independent doctor notes about other limb involvement. What made this difficult for me was the Workman’s Comp system. My claim only mentioned my right arm. When I brought up the potential that my left arm was involved, they said they could not look at it unless I filed a claim for it. At that point, I was tired of the system and it was only a minor issue to me, I decided not to file a new claim. But it was important enough that two other doctors made note of it. Do not discount those fleeting mentioned items. They could be the difference in being denied or not.

Not an end, just a pause for now

Well, as any of you know already, pain sucks. But, for a change, it is not my pain. I still seem stable for now as far as that goes. One who is close to me is not so well off at this point. I am in the recently odd position of having to help someone else with fairly basic adult daily living type things, and I am glad I can still do this. And the person I am helping now has a deeper understanding of what I have gone through the last ten years or so. The jury is still out as far as the issues being faced.

As I said, I am stable. What that means is that I am still weak. My shoulder blades still are winged. My right thumb is still basically worthless. But as I may have mentioned, if my right hand was stronger, I would still be unable to lift much with it at this point.

I have to wonder about all of the websites that suggest that NA/PTS only usually impacts the right shoulder. Yes, that would mean that the causal agent can determine right from left, and up from down. Yes, the agent that causes PTS/NA knows that the right side is the right side and the left should be left out of the attack. And while we are at it, it also knows to stay out of the other plexus sites. No need to go there. It is too far away to matter.

Well, in my case at least, the causal agent is just not that smart. Sure the left shoulder is not impacted as obviously as the right, but the weakness is exactly the same right to left. The weakness goes into my lower back and upper legs. There is not anything obvious down there to be winged as the scapulae do, but that does not mean the nerves are not being impacted just the same. Most websites suggest that not only should my damage be restricted to my right shoulder, but also that I should have recovered by now. That does not seem to be happening either.

I have to wonder what my occasional need for super deep breaths might mean. Is my phrenic nerve also compromised already? For the most part I am breathing just fine. But in certain positions I do find I have to take an extra deep breath every so often. I know people who are on oxygen due to PTS. Is that in my future too? Maybe I am good for now. But what about the next attack that is sure to come in the next few years? Just like the killer earthquake that the San Francisco area is bound to have at some point, I am waiting for my next attack.

I try to stay physically strong, but how do you exercise muscle that has no nerves to fire it? In my brief returns of strength, the muscle still works, and seems to be able to get stronger as long as it works. But then, it disappears again and I return to being weak. I have always been thin. I guess it is time to give up on ever looking any different.

Good bye for now. I hope you all are doing better than I am, and maybe you will be able to recover as the websites suggest you will, at least on average. I guess I have never really been average. No reason to change that now.

I will be back at some point.

Be well. . .

Strength gone again

Just now I am back to around 5 push ups.

I am curious if anyone else with PTS by whatever name you know it- has this sort of fluctuation in strength. My doctors will not discuss it, which is just as well since they do not understand anything about it.

Timolol and strength update

Well, it has been a bit more than a week since I have stopped the beta blocker eye drops, aka Timolol. The theory is that they may have either caused or exacerbated my tremor and muscle weakness. The timing suggests at least a probable cause enough to be suspicious.

Initially, I felt that my fine motor control was much improved, and the few twitches I have had ongoing appeared to have stopped.

But then I had to go and spoil it all by attempting to do a bit of yard work today.

Trying to lift things is still a problem. But, overall my lower back and upper legs felt much stronger than they have in previous similar outside work. My hands, particularly on the left, still tremor after any exertion. At one point I had my left hand resting on a board trying to hold it steady, and it was shaking quite a lot. I just tried to work through it.

During the work period, I had a few instances of just not knowing how to proceed. I am not good at building things anyway, but this was a fairly simple thing to attempt. I am not sure why things like this seem to happen. I guess there was a symptom for confusion listed in the Timolol. And I also know that can happen for magnesium deficiency. It has got to be the Timolol unless there is still something else at work here other than NA and its associated weirdness.

I got to a point, I just had to quit though. It was not quite done, but I was at a point that going on would have been prone to my making mistakes, and some of those could be dangerous when weakness takes over while using power tools. My shoulders were done. I could feel my scapulas trying to hold my shoulders stable- and it hurt a bit. Now I have trouble reaching my arms out away from my body. I may have over done things.

But I also just did 30 push-ups with only minor shaking towards the end.