My right hand. . . Now what?

It has been a while since I have written anything that actually was about NA, the subject of the blog. As it turns out, I have been preoccupied by other matters.

Remember that my right hand had been the site of my original attack of NA? Today, when I woke up, I began to notice that my right thumb and index fingers were tingling a bit. This increased through the day, and has been going on for around eight hours now. It increases when I stretch my arm out away from me. This is from the lower part of my hand, radiating out through all but the little finger. It has now been just under ten years since my first incident with my thumb and index fingers of my right hand. And my hand has been pretty much a quiet and a non issue for at least 5-6 years.

What does this mean? Hey, even though I got lucky with the diagnosis for my shoulder, I have no clue about this. Doctors I have seen pretty much implied that any tingling like this would happen only early on in the injury, and then it would eventually stop. And, they did not seem to be suggesting that the tingling was a good thing. What do I know? Not much. All I know is that the last time I felt this much activity in my hand was right before I became able to move my index finger again. And one more thing; I have routinely stretched my right arm out in the way I am now doing that cases the tingling to increase, and there was nothing. Tomorrow, maybe there will be nothing again. But for now, I know something is going on that has not happened for a long time.

To spill, or not to spill

I had known I had a tremor before but I did not choose to do anything about it until it started to impact me in a way that others would notice. I guess some might have noticed me before this, but I could still believe that they would not be sure they had really seen what I could feel happening. It all started at Starbucks.

“Do you want room for cream in that?”

Of course not; if they leave room for cream, they are cheating you out of coffee you have paid for. Anyway, if you ask for room for cream they always leave too much room for me. I just like a splash of it for flavor. And nine times out of ten, they still leave enough room for cream even when you say not to. That tenth time in this case, is the one that got me.

My barista (it is hard to think of them as baristas when they are filling a paper cup with coffee from Starbucks) filled my cup, and snapped the “to-go” lid on. I took it over to the sugar and cream station and removed the lid. My coffee about spilled over even sitting on the table there, it was so full. I thought to myself, ‘I will just pick this up real quick and drink it down a gulp or two so I can put some half-and-half in.’ And there would have been a time in my past that this would have been the thing to do. But, now was not that time.

I had raised the cup up halfway and it was already about out of my control. I stared at my hand willing it to be still, knowing it would not, but still unable to continue raising it, or lowering it back to the table. The shake got worse. It is funny that I should have known this would happen with a paper cup. It always does to some extent. If it had been a porcelain mug, the extra weight would have made it a steadier task. But these paper cups are just the right weight to set up a tremor, and I knew that. Why didn’t I think to steady my right hand with the left? It is a strange thing that putting two shaky hands together for me anyway, still works to steady things down a bit. But, how would that look? In some ways, using my left hand as a stabilizer would have been admitting that I had a problem. Yes, it would be much better to just stand there with cup half way to my mouth. By then, it was too late to do anything anyway. The coffee was splattering over my hand by then.
My first thought was that this stuff was way too hot to have tried to sip down to a more manageable level anyway. It was better to burn my hand a bit than to have to nurse a burned tongue for a few days. And it had the same effect as having drunk the coffee to a manageable level in the cup.

Now the worry was how many people witnessed my accidental spill? Where did Starbucks put the napkins again? It always seems like they hide them. OK, just sop up the spill, and move on. Of course I am shaking even more now with the added stress. People are around me waiting for me to move out of their way. No one wants to rush the poor old shaking man who just spilled coffee on his hand.

I have tried to be better about these types of events since then. Of course, now I am on Propranolol so that limits my shake to a degree. And, I am trying to be less caring about what others may see when they look at me. Maybe they understand. Maybe they do not. Maybe they have something they are sensitive about also, and they are not even looking at me lest I notice what they are attempting to hide. Maybe next time they ask me if they should leave room for cream, I will just say, “yes- leave a bit of room.”

I am cured. . . not

That is right. I saw my new Neurologist yesterday and today I am healthy. It is funny; I do not feel particularly different. I think that is because he chose to ignore certain things I said and focus on his machines that all predictably functioned flawlessly and told him that I had no neuromuscular problems. Everything is just fine here. No reason to ever come back to see this one. I am done.

So, what happened about the lower than normal CK blood test results? It all depends on who defines what is normal I guess. The lab that actually did the test flagged the results as lower than normal. My doctor did not even say that result was there. If I had not gone in and gotten my own copy of the results, I would never have known it existed. He would have been content to not even discuss that. But, according to him, he was only interested in that count if it was elevated. That is why he glossed over it.

What about my weakness you ask? Well, so did I. He suggested my weakness is only in my arms and it is due to my NA only. What about the crash in muscle function? It is of course because being out of shape as I am, I over did my recovery and potentially blew out the axons connected to the nerves that had regenerated to carry on new muscle return in my arms.

Well, that may fit for the arms. But it says nothing about weakness in my lower abdomen or legs. Well, if I am weak there, it is because I am out of shape, he suggests. There is no neuromuscular issue in my legs or feet. But, he did not test in my upper thigh which is the area I pointed out feels odd. And he did not test in my stomach area which is where I pointed out felt weak. When I told him I had done 10 sit ups and could not do even one ten minutes later, he suggested that I had used my weak arms to aid in the sit ups, and that was why I had trouble doing them.

Why do doctors always know you better than you know yourself?

Jury is still out

I do not have any official answer yet, but a new result is here. I seem to have a lower than normal total CK reading. That is a test of Creatine Kinase levels. Lower than normal readings could point to either late stage Muscular Dystrophy (levels are usually higher than normal in earlier stages and decrease as muscle mass decreases), or Myasthenia Gravis. Since I already reported I have certain signs of MG, I tend to think that might be the case. But again, just because I have beat my doctors to what turned out to be a correct diagnosis in the past (my diagnosis of NA)it doesn't mean I am right this time.

Finally relief for the tremors and twitches

For more information on Essential Tremor, see http://www.essentialtremorinfo.com/

For those who have been on this journey with me, I finally have some relief from the twitches and tremors that have cropped up since my NA started. I am not 100% sure that they are related to the NA, but it is a fact I did not have this before and have had it since the NA started.

Essential Tremor in itself is not life threatening, but it may depend on the cause just how much of a problem it becomes for you. It can be benign but it may also be related to things you do not want to ignore. I have never ignored mine. I have even pointed it out to doctors along the way. Most of them have noted officially in their reports that “no tremor was noted”. These guys were taking the easy way out, or they were blind, stupid or both.

Basically, this tremor is caused by some sort of underlying neuropathy that makes sets of opposing muscles start to work against each other. Normally these muscles would be able to balance the load. With essential tremor, one set gets weak in relation to the other. The muscles fight each other instead of working together. The result of that struggle is seen as tremor. The twitches may be related in a way I do not understand.

Is this a part of NA? I do not know. My Neurologist suggests that the tremor differs from NA in that NA is a peripheral in nature, and essential tremor is central. All I can say right now is that my Neurologist is not speculating as to a cause until he sees test results. Yep. I had to have another blood draw. That is three in the last 3-4 months. He did put me on Beta-blockers though so I can get some relief from the constant twitches and tremor. These have gotten worse of late. But, I have been living with them, and while I have been OK for the most part, I really notice, now that they are starting to go away- just how bad they had become. I am much better now after just a couple of days. My body feels more balanced. It is calmer than I have felt in years. When I sleep, I really sleep. It is amazing to realize just how much of a disruption to my sleep that these twitches had become. And for the first time is ages, I can hold a cup of coffee without steadying it with my other hand. I just feel that I have gotten more in control of my everyday life.

What now? I am still waiting. I know that there is no current cause in my brain- or it has not shown up yet anyway. So my life is still up in the air as far as a cause for any of this. But at least I feel more of the finer things (related to fine motor control) of my life are improving. I will spill less coffee as I wait for more information.

Short update

Pushups are now back to 18, and a struggle.

Brain MRI is negative as far as any pathology goes. So I have a large healthy brain.

New Neurologist is very interested in my tremor and the family history. He gave me a prescription (beta-blocker) to help control the tremor and wants to do the EMG still. He is very thorough and no doubt that he will do a better one than any previous attempts. Oh, and he wanted to do his own blood test.

Other than that, I am hanging in there. It is a relief to find out that I do not have anything tumor-like in my brain.