Read this if you have Twitches or Fasciculations

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ccox

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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
 

JHunter

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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
 

Boo Boo 621

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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..
 

brendapals

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boo,
Did you get something for your anxiety yet?
just checking. good luck tomorrow and enjoy Christmas,
brenda
 

JHunter

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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..
 

CindyM

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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.
 

Boo Boo 621

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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!
 

Erica

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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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Al

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Stop it, you're making me blush. We all try to do what we can to help others here.

AL.
 

Erica

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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.
 

halfin

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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.
 

BethU

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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.
 

Al

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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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