Read this if you have Twitches or Fasciculations

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Thanks Al. I hope this link will be helpful. Please note that the young man in the link asks 9 questions to the neurologist. Somehow, the neurologist's answers get plugged in right after the young man's #2 question. Please scroll to the bottom of the page for his questions number #3-#9.
Take care,
Carla
 
Twitching does not mean ALS

If I had what I thought I had at 30 years old I would not be here today. 37 years old. At 30 years old I started having tremors and then twitching just about everywhere on my body. I looked this up on line and everything pointed at ALS. I was filled with fear for My life and family. I was soo depressed I came close to suicide. I was really, really close to that.! I was tested for Lyme, had the CAT scan, EMG, and any other test you can think of I had it. I told My Nero I had ALS and that was it. He disagreed after all of the test. I asked Him then what is it? He said Mabey MS. It has been 7 years now and I still have twitching and tremors. My advise to anyone who looks up twitching or tremors is not to diagnose yourself online. Please don't put yourself through what I did. For all You people out there that have been diagnosed God Bless you and have a Merry Chistmas. I pray for a cure everyday. :p
 
Thank you JHunter for what you wrote, I still just cant shake this terrible fear I have. And I feel horrible for posting my fears on a site where there are actual people living with ALS. I'm just someone trying to diagnose myself in the most irrational state. I know it but I can't seem to stop it. Especially when I'm going to have an EMG tomorrow and now I read that maybe neuros dont always perform it properly..
 
boo,
Did you get something for your anxiety yet?
just checking. good luck tomorrow and enjoy Christmas,
brenda
 
Don't diagnose yourself using a computer!

I hope Your EMG went well. If the Nero says you do not have ALS then You don't. Because of online diagnosing Myself I told the Nero He has no idea what He's talking about. I was convinced I had IT. 7 years later I can now tell you I don't. Why I have excessive twitching and tremors is beyond Me. I hope and pray everything works out for you and I have a feeling it will. Take care.:p
Thank you JHunter for what you wrote, I still just cant shake this terrible fear I have. And I feel horrible for posting my fears on a site where there are actual people living with ALS. I'm just someone trying to diagnose myself in the most irrational state. I know it but I can't seem to stop it. Especially when I'm going to have an EMG tomorrow and now I read that maybe neuros dont always perform it properly..
 
Why I have excessive twitching and tremors is beyond Me.

:smile: This is exactly what I tell myself. But after two years I know it is not ALS. My ALS doc says he gets about 6 patients a year like me- clearly something is going on but they cannot say what. He said to prepare myself for getting worse, which was a correct suspicion on his part. But "Worse" did not mean ALS, nor apparently, did it mean any other major disease that causes ALS-like symptoms. I figure if I got used to the symptoms, I can get used to living with the mystery. Life is too short not to enjoy. JMOHO.
 
If you read my other posting under the "ALS" thread heading..I called my family doc today and he is out of the office thru Monday. I will call him back to make an appt to discuss the level of anxiety I have been unable to escape from lately. And I'm sorry to announce I did not go thru with the EMG. I know maybe I should but I just can't get into that right now. I just want to be myself again and focus on my beautiful baby daughter and my husband who is wondering why I have not been myself lately. He knows about my initial fears but thinks that after I saw the first neuro who wasn't interested in setting me up with an EMG, I have cleared my head. I am such a liar!
 
To Al

AL,
I'm new to this forum, but just want to let you know that you are my HERO. with your posts and suggestions you helping some people more then their doctors.
 
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Stop it, you're making me blush. We all try to do what we can to help others here.

AL.
 
Al, You are a Mentor, compassionate listener and supporter.
It means a lot to someone like me.
I was diagnosed by my Neuro and now have to wait for a month to see a specialist.
While in this waiting period, I started having symptoms in my other arm and left leg, spasticity in both of my arms and fascis all over my body.
I'm just so scared that I have a very agressive progression. What do you think?
To me , you know more about this disease then my Neuro.
Thanks again for being there for a lot of people like me.
 
I actually rather enjoy my twitches. I don't think they mean anything, in my case. I have some other symptoms that are worrisome but as I understand it, if the twitches were caused by serious disease I'd probably have muscle weakness, and I don't. I'm very strong.

But aside from what they might or might not mean, I find the sensations rather pleasant. It feels kind of like a very light, whole-body massage. Maybe a bit like those fancy vibrating chairs you see at the mall sometimes. Fortunately they don't keep me awake, I have no problems falling asleep, just drifting off with these gentle vibrations throughout my body.

I wonder whether other people are bothered by fasciculations mostly for what they might mean? Or are the sensations themselves irritating and unpleasant? Maybe people have different kinds of twitching.
 
halfin ... my hunch is that benign twitching can be much stronger and more annoying than that connected to other, more serious, neuro conditions. With frequent, strong twitching, it is a constant reminder that Something Is Happening, so if people are already nervous about their bodies or have some underlying anxiety, it keeps them on edge. It's like earthquake aftershocks: you react much more strongly to the continuing small jolts than you did to the first big one.

Although I have ALS, I have found that some symptoms (euphoria, intensity of connection to the natural and spiritual world, some physical experiences, such as intensified physical pleasure [oh, do showers feel good! and so do waves of goosebumps) feel great. Other symptoms, not so much. :lol:

As the politically incorrect like to say: Might as well relax and enjoy it.
 
Hi cookie. If you've read here a bit you'll have noticed most peoples symptoms intensify while waiting. You're no different. Try to stay calm until you get news, good or bad.

AL.
 
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