ALS has so many facets and so many varied symptoms. Lately, one in particular, fasciculations or twitches of muscles throughout the entire body has been causing me much discomfort and distress lately. If you’ve ever had a twitch under your eye or a finger twitching, in ALS, it is a little different. It feels as though the muscle is rippling underneath the skin much like a snake belly ripples as it propels itself along. Mostly, they are small and distracting during the day because I am able to still move about so much and not notice them (as much). Occasionally, there can be a sudden twitch like a rogue wave in the ocean that causes a limb, finger or arm to actually move a bit. I hate it when this happens while I am trying to control the computer mouse… :-)
As I said, this isn’t so bad during the day, but just try to sleep with this going on all over your body. The doctors say that there are no drugs to subdue this symptom, but it can be masked by taking Valum or other relaxants prior to bedtime. I tried baclofen for a long time to combat this, but it appears that I don’t have the symptoms that are best suited for baclofen (i.e. muscle cramps and/or spasms: more on muscle cramps in a moment). Clonezepam has been prescribed for anxiety, but it has a side effect of subduing fasciculations. I take 1 mg of this approximately 2 hours prior to bed. It works faster than this to make me tired, but when I hit the bed, I want to be out immediately and not lay their feeling these movements.
Take a look of the video to get a better idea of what I’m talking about. The lighting had to be just so… to cast shadows in the proper way to make them visible to the camera. These occur in my upper arms, chest, calves, neck, tongue, etc. sometimes I believe that I experienced fasciculations far more than the normal ALS patient. Also, I truly believe twitches are the beginning signs that those muscles are beginning to atrophy. My legs have been strong for almost 4 1/2 years, but are now starting to show signs of significant atrophy. My forearms and hands don’t really experienced twitches anymore and they are almost totally useless. All in all, I realize that I am a slow progression example and thank God every day for the many additional years that I have been granted. It angers me and upsets me deeply when I hear stories of people who are affected by ALS in the more traditional two-year timeframe. This shitty disease needs a cure, and fast!
* This was dictated with Dragon Naturally Speaking ver. 10 Pro speech recognition software. Please excuse any "Speakos" I may have made. :-)
I agree, too many years have passed, it's time for a cure! I keep you in my prayers, carhy
ReplyDeleteRoger, you are an amazing man! Your attitude and zest for life if truly amazing. This post frightens me. I have experienced this type of twitching for 6.5 months. They started in my calves and have progressed to my thighs, back, shoulders, arms, and tongue. I had an emg administered 4 months ago that was clean except for fasciculations that were detected. I also get the jerks that you describe. Like you, I'm a father of 2 young boys and I'm so frightened. Reading things you write really helps put things in perspective for me as it appears we are experiencing (or have experienced) the same presentation. I fear that I am nearing an als diagnosis as well. God Bless you and your family.
ReplyDeleteI'm having this issue as well. It's very troublesome because my dad was just diagnosed with ALS. The only reassuring thought I have is that it might be stress induced. The fasiculations began when I started working out of college. The were constant until I took a trip to an all inclusive in Antigua. Then they were completely gone for the trip and months afterward. Gl with it.
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