Feeling depressed and helpless. Please help

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Feeling depressed and helpless. Please help

Postby joycecaroll on September 5th, 2014, 11:40 am

In May I had my first tongue twitch, Than in July it happened again. After that maybe a couple of times more. The twitching only lasts a couple os sec's and then go away for weeks. I had a clean EMG of the tongue in early August. 10 twitches of my tongue has destroyed my life and I know it's pathetic.

My whole life is about theese *beep* twithes in my tongue. I've stopped going to school (one year from being a nurse), feel depressed all the time and am so scared of bulbar onset ALS that living has no meaning any more. I've asked so many questions here and on ALS sites that people are sick of me at this point. I feel like there's no where I can turn for help anymore.

My neuro doesn't listen. I ask "can tongue fasciculations be benign" and "can an emg be to early to detect ALS" and he just doesn't give me any answers. I just want to know that tongue fasciculations can be benign! And I wan't to know that I didn't do my emg to early!

TwitchyDoc has been a great help as he informed me that fasciculations in ALS are persistent. After he said that to me I had my first good day since May. It was amazing.

Then I read (know I shouldn't but I did) that fasciculations in ALS actually CAN be sporadic + that one can do an EMG to early (I just waited 6 weeks) and now I'm back at square one again. I'm so SICK of this! I try to ask good questions and keep my anxiety under control but I feel I never get any good answers. Why do doctors claim tongue fasciculations are never benign? Why do people say you shold wait 6 months before having an emg? Can ALS fasciculations be sporadic or not?

I'm seriously scared about how depressed I feel. I'm so sick of this. I just want to get back to my life. Sorry for this negative post but I just had to ventilate.
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Re: Feeling depressed and helpless. Please help

Postby joycecaroll on September 5th, 2014, 12:33 pm

EMGs cannot be done too early. 70% of a nerves fibers die before you feel weakness. An EMG will detect that process long before you can feel it.

True?
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Re: Feeling depressed and helpless. Please help

Postby MarioMangler on September 5th, 2014, 2:27 pm

Of course tongue twitches can be benign. There are hundreds if not thousands of cases in the archives of people here who had tongue twitches and it was nothing more sinister than BFS. Remember, if you have a muscle (and the tongue is a muscle) it can twitch. That's just what BFS does.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Feeling depressed and helpless. Please help

Postby misterjuanperalta on September 5th, 2014, 2:58 pm

I recommend to see an ALS specialist, as some have done. Otherwise, change neurologists.

This article could help you be at ease: http://www.scarysymptoms.com/2012/09/no ... neuro.html

Regards
Last edited by misterjuanperalta on September 5th, 2014, 3:54 pm, edited 1 time in total.
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Re: Feeling depressed and helpless. Please help

Postby J4son on September 5th, 2014, 3:26 pm

joycecaroll wrote: Can ALS fasciculations be sporadic or not?



According to a neuro (sorry forgot his name, it was at the time where I used to check a lot of material on internet, and I don’t recall the source) ALS twitching is either continuous or comes in series, like a spot twitching a few times, then stops, then a few minutes later twitch again then stops etc. with something like 40 or 50 series per day, every day. So it is very different from someone having a tongue twitch in May, then another one in July then nothing for a few weeks etc.

Look I had to face in my life a couple of episodes of health anxiety, and if I learned something about it it’s that you cannot overcome health anxiety unless you face it bluntly and head on. I am going to give you an advice that you will probably not follow, but here it is:

1) Make a promise to yourself to never ever check your tongue anymore even with a gun pointed at your head. Your enemy is not ALS; it’s that flashlight that you use over and over until you find something weird worth frightening you. I have never checked my tongue in the mirror because I know without any doubt that if I do it I’ll find many unpleasant things. Remember Nietzsche: “when you gaze long into an abyss the abyss also gazes into you." No one is forcing you to hold that flashlight and start checking your tongue. Don’t do it anymore even if the temptation to do it seems too strong.

2) You can take a calendar and cross every day without checking your tongue. Every day will be a victory.

3) Find alternative behaviors. Do some sports, you always have an alternative activity that could be undertaken in place of self-monitoring.

If you do this, well days will pass, then weeks, then months, Christmas will come then New Year and you will find that you are ok, that nothing changed and that you do not have bulbar weakness.

Bulbar ALS starts with very specific symptoms, slurred speech noticed by everybody, difficulties swallowing, chocking on food etc. It is amazing how on this website people can fear a disease for months and years without ever developing the main symptom of that disease.
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Re: Feeling depressed and helpless. Please help

Postby joycecaroll on September 5th, 2014, 4:28 pm

J4son wrote:
joycecaroll wrote: Can ALS fasciculations be sporadic or not?



According to a neuro (sorry forgot his name, it was at the time where I used to check a lot of material on internet, and I don’t recall the source) ALS twitching is either continuous or comes in series, like a spot twitching a few times, then stops, then a few minutes later twitch again then stops etc. with something like 40 or 50 series per day, every day. So it is very different from someone having a tongue twitch in May, then another one in July then nothing for a few weeks etc.

Look I had to face in my life a couple of episodes of health anxiety, and if I learned something about it it’s that you cannot overcome health anxiety unless you face it bluntly and head on. I am going to give you an advice that you will probably not follow, but here it is:

1) Make a promise to yourself to never ever check your tongue anymore even with a gun pointed at your head. Your enemy is not ALS; it’s that flashlight that you use over and over until you find something weird worth frightening you. I have never checked my tongue in the mirror because I know without any doubt that if I do it I’ll find many unpleasant things. Remember Nietzsche: “when you gaze long into an abyss the abyss also gazes into you." No one is forcing you to hold that flashlight and start checking your tongue. Don’t do it anymore even if the temptation to do it seems too strong.

2) You can take a calendar and cross every day without checking your tongue. Every day will be a victory.

3) Find alternative behaviors. Do some sports, you always have an alternative activity that could be undertaken in place of self-monitoring.

If you do this, well days will pass, then weeks, then months, Christmas will come then New Year and you will find that you are ok, that nothing changed and that you do not have bulbar weakness.

Bulbar ALS starts with very specific symptoms, slurred speech noticed by everybody, difficulties swallowing, chocking on food etc. It is amazing how on this website people can fear a disease for months and years without ever developing the main symptom of that disease.


Thank you ♡

I know I should feel better knowing fasciculations in ALS aren't silent for several weeks. I'm obsessing over the timeframe of fasciculation onset and emg/onset of weakness. From what I gather at this forum onset of weakness could be 6 months after fasciculations start. I also understand that an emg could miss als during this phase. As I have only a few months under my belt this is frustrating to me.
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Re: Feeling depressed and helpless. Please help

Postby misterjuanperalta on September 8th, 2014, 12:25 pm

So BFS twitches are not constant?
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Re: Feeling depressed and helpless. Please help

Postby Yuliasir on September 9th, 2014, 1:05 am

They are not constant in terms of location and duration but hotspots are also common.
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Re: Feeling depressed and helpless. Please help

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