2 Years 5 Months with ALS Fear

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GolferGalaxy

Well-known member
I am 2 years 5 months into this mess and I can't seem to get over the fear of als. Part of the reason is that I have nonstop internal vibrating/humming/tremoring sensations that never go away. This results in soreness and fatigue in my muscles. My limbs always shake upon exertion. I randomly twitch all over but that is not my primary symptom. My teeth also chatter nonstop and I have discovered a dent in the outer part of my right thigh. This is also the same location where I have a strange feeling like there is pressure on my leg or the muscle is being tugged at from the inside......strange, I know.I have been cleared by two Neuro's. I had a clean EMG in Feb 2008, normal MRI of the brain & c-spine in Oct 2007. Several clean clinicals. I went the psych route and took Zoloft and Clonzepam. This reduced anxiety but not my symptoms. I just can't seem to buy into the idea that whatever it is that I have is benign. This stuff is getting the better of me.Any suggestions?CDC
 
After over 2 years of symptoms, you are now NO more likely to develop ALS than anyone else in the world. Dents in muscles are of no significance - someone called Kit (a doc, like me) wrote a great post about dents and atrophy a couple of years ago - worth a read. I have had symptoms for 16 months now and still have periods of anxiety about ALS so I quite understand your concerns but realistically, after so long, I see no reason for you to genuinely have any real cause for concern about this diagnosis.Good luckSimon
 
Thanks Simon!Does anyone else here have the nonstop internal sensations? How about the limbs/muscle shaking upon minimal exertion and the constant fatigue? My doctors have no answer for this. Any feedback would be greatly appreciated.Thanks,CDC
 
I have many symptoms as you probably know. It helps me to realize that I do have something going on with my nerves rather than thinking there are only two options "totally benign" and "ALS." The exact nature of what is wrong is a bit of a mystery but I just take it one day at a time and try to be optimistic since not much is worse than ALS and it doesn't look to be that. I also take lots of supplements that help with nerve health so I don't feel totally helpless and do other things that everyone should do for good health. I have internal vibrations but Klonopin reduces them. I also get shaking muscle on exertion. This is normal to some extent but mine are probably more shaking than they should be from my weird nerve issues.
 
I have had vibrations or buzzing in my left bicep for about 3 months now, off and on. Right now its on. Im also getting them in my legs. I get cramping in my right calf almost every day for months. The muscles on the outside of my calf has been moving or rolling there everyday for 7 months. I also get internal pulsations in my arms alot. Very rapid, but not visible. I normally get this mostly after waking up in the morning or from a short nap. I have had 3 emgs. All clean. I also was told by the last ALS specialist that I had mild periphrial Neuropathy. I too think I have something more than BCFS. Its just so weird all the different sxs I have. The muscle twitches are the least of my concern these days. And believe me, I have hundreds or thousands each day at times. Most are very fine, deep twitches, but I also still have some big ones too.I hate the small ones more than the big ones. A lot of people think they have the worst and weirdest symptoms. I am President of that club. My wife finally noticed my legs have gotten smaller. She told me she wasnt sure if she should mention it or not. I told her to always be honest with me if she noticed anything.I know I have not had much physical activity as far as my legs are concerned, and Ive lost about 25 lbs over the past 7 months, so I guess they will be skinnier. I dont obsess about ALS much at all. Unless everything Ive heard about having a clean EMG is incorrect, I dont see how I could have it. I just know that my symptoms continue to get worse as time goes by. Im still walking, got most of my strength as far as I can tell, but I am not the man I was 7 months ago by a stretch.
 
Well I have got over the fear, it's a couple of years since I joined this board, and I haven't stopped twitching yet, nor ever will.ALS is the least likeliest of things to worry about.For me, I have had new preoccupying worries since, that's what we do, worry.I was in hospital recently, and there was a guy there in the next bed who did not make it, 71 years of age, died of pneumonia on top of chronic emphysema, essentially he had smoked himself to death. It was very sad but you have to figure heart and lungs are the things to be worried about, that is what most of us will die from, and in old age too.
 
I'm 4-5 months in, and I feel like I have weakness, that is why I am scared of having alsI am only a teenager, so its unlikely, but it's also unlikely to be twitching as much as me.
 

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