Fellow twitchers please help

[Lilly13]

Hi everyone,

I am a 23 year old female, I am a university student who suffers from severe anxiety. Health anxiety is new to me and extremely debilitating. It is safe to say that is ruining my life.

This forum has thus far provided me with solace. It is nice to see fellow twitchers.

Here are my scary symptoms:

Cramping in hands, feet, arms, legs, fingers
feeling weak in arms, legs, wrists, ankles- however I have no loss of functionality I can still write, turn keys, lift things, walk ect. BUT i feel easily exhausted.
TWITCHING- ENDLESSLY- EVERYWHERE

I have a neuro appointment in a month, but I am having such great fear.

Could this be anxiety? Does this sound like ALS?

Any help is appreciated!
xx

Best,

Lilly

[popejoan]

Hi Lilly,

First of all I'd like to say that twitching is very common. I twitch a lot, especially on my hands, arms and chest.

ALS first presents itself with muscle atrophy and weakness. Weakness is not like I have trouble holding the hair dryer over my head kind of weakness, it is like I can't hold the hair dryer over my head kind of weakness. It means you fail to do something. If you don't fail to do anything you can normally do, you don't have ALS.

If you don't have muscle atrophy you are fine. I'm not talking about small dents in muscles or left arm being 1-2 cm smaller than right arm. The difference should be significant that others can see as well.

I have had huge ALS fears and I know how difficult it is to get over it because I haven't 100% over it myself but you are too young, ALS is too rare and just twitching almost always means nothing.

Hope I could help. Feel free to ask anything, I know more than I should about this disease and would like to help. Take care x

[JohnW]

Hi Lilly,I started twitching all over 8 weeks ago even my tongue.I had an emg 2 weeks ago on arms,legs face,tongue and everything came back normal.My twitching has reduced a lot but I am now fixated on my tongue everytime it twitches I get so depressed.I even got a second opinion last week the consultant looked at my tongue and emg results and said my twitching is benign do I belive him no.Im new to health anxiety so I couldn't understand why I don't belive my tests and doctors,if my all over twitching is benign I'm sure you have nothing to worry about.

[Lilly13]

Hi John,

It is frustrating isn't it? The worst part is, I have had my doctors be wrong before... this feeds the beast. However, it is usually never as bad as I think it is going to be. Ie. My colon cancer fear ended up being colitis. (yay, but my doctor said it was anxiety related.)

From my extensive research on ALS, I have found that bulbar onset is the RAREST kind. The disease itself is already really rare, but only 20% of those rare cases are bulbar onset. The first thing that is noticed is slurring of speech. If your tongue was losing strength which it would be over a number of months with twitching, you would notice quickly. I read that tongues are really delicate and you notice right away! BUT I totally emphasize with you John, I thought my tongue was twitching and I had a melt down, I also noticed dents on the side of my tongue ( I have TMJ so most likely bite marks.) However, I have told myself that IF this is was atrophy from ALS my speech would not be perfect, which it is! And I wouldn't be able to eat and drink perfectly! Which I can! :D


I hope this experience helps you, I am much more logical with other people than I am myself. That is why i'm getting a masters in social work haha!

Please believe the doctors! I am praying for a clean EMG - which I can't convince myself that I am going to get, mainly based on the muscle pain I feel and the cramping :(


Something in me knows we will be okay though.


Best,


Lilly

xx

[popejoan]

Hi John,

I'd like to help you with your Bulbar onset fears. ALS patients do not feel their tongues twitching and it's not like an occasional twitching, it looks like there are hundreds of worms under your tongue's surface.

Bulbar onset almost always starts with speech, if people around you asking if you've been drinking then you can start worrying.

Also, clean EMG = No ALS. ALS patients' EMGs show both acute and chronic denervation plus fibrillation. EMG doesn't miss all this.