Worried about ALS

[Jordan8810]

Hi there,

I have read the stickies and I understand that it says ALS rarely starts with twitching but from cases/ stories I’ve researched over the internet, I have found it can in fact start with twitching in many people. This leads me on to my concerns:

For over a month now I have been experiencing quite aggressive twitches all over my body. They are currently predominantly in my legs but can vary and also tend to be in my glutes, arms, stomach/ back, feet, hands and face. They have got so bad that they are making me physically jump, particularly whilst trying to get off to sleep.

I also have found that I am getting some numbness and pins and needles/ tingles in various parts of my body as well as occasional prickling sensations. The twitches are currently the main symptom however.

I hadn’t noticed it before but my left hamstring seems slightly more sunken than my right.

I am also experiencing some stiffness in my left hand compared to my right.

I have been to the hospital about this and they have done some strength tests. I haven’t noticed weakness yet. However I am a frequent gym goer and am concerned this could mask any weakness until it gets to a serious point (as I have heard of other cases where people exhibited symptoms despite still getting stronger at the gym - for a period).

I had an MRI on Tuesday and am currently awaiting the results. I have had blood tests but am not deficient in anything. I should also mention that I had been having a tin of tuna daily for lunch, which I was unaware could potentially cause mercury poisoning and put me at high risk of developing ALS.

Thanks

Sorry if I put this in the wrong category

I should add I’ve also been having issues with coordination. For example if I go to open a draw, I may miss the handle and not judge things correctly. Which I’ve seen from stories that this can also be a first sign of ALS. Along with this I’ve been having symptoms of brain fog, forgetfulness etc.

I also can feel my muscles constantly shaking/ vibrating (arms and legs in particular).

 

[ShiftKicker]

Hello-

I have moved your post to the correct subforum and changed your forum interest to "Learn About ALS".

Please make sure to read here- Read Before Posting- for answers to common questions and for forum posting rules, etc.

Twitching absent any other symptoms associated with MND would indicate you have something else going on. Particularly as you report sensory issues such as tingling, pins and needles, etc. Hopefully your doctor will be be able to help you figure out what is going on, but ALS does not appear to be the problem.

Take care

 

[KimT]

Get your Mercury level tested. I did. Mine were all in the normal range. How long have you been eating a can of tuna a day? It does take some time to build up to a toxic level.

It sounds like you have someone who is medically following you.

I wouldn't worry about ALS at this point. Keep working with your doctor.

 

[Jordan8810]

Thanks for your replies

It’s probably been 3-4 years that I’ve been having tuna each day. Just concerned that may have caused some long term damage and made me more susceptible to ALS, especially since my current symptoms don’t seem to be disappearing.

Being that I tend to have a slightly stiffer arm/ hand and my arms tend to be slow to respond to me wanting to move after being asleep I was concerned this and the potential atrophy in my left leg could all be signs ultimately be signs. I’m just hoping that no weakness follows.

Thanks

 

[Nikki J]

There are two issues with mercury when discussing ALS. There is merury poisoning which is not ALS. It is a mimic and one often tested for in a rule out process

there is some research that a higher mercury level correlates with an increased rate of ALS. Correlation is not causation. The purported increase is about twice the rate of the general population which means the risk is still very low

stop eating tuna if you are worried. Ask to have mercury levels tested. Stop googling

 

[lgelb]

Do not believe all the Internet hype about twitching leading to ALS. Twitching without clinical weakness or stiffness is meaningless as regards the disease.

The same is true for "masking" losses of strength. You can perform normal motions or not. And you are reading rear view mirror stories, subject to failures of memory.

So, second staying off Google. There is so much more to do IRL, with your relatively good health.

 

[Jordan8810]

Sorry to follow up. I have noticed that my calves and hamstrings tend to be tighter/ tenser than they were. As well as a constant buzzing/ vibration/ internal shaking throughout my body but more noticeable in my legs. I still have no weakness as of yet which is a positive.

I have seen that some members in the past noticed the tightness and vibrations as a first indicator, so was keen to get your opinions.

I am currently still awaiting my MRI results and hoping to get an EMG booked still once the MRI results are back.

Thanks

 

[Bestfriends14]

I've not seen members with tightness and vibrations as a start to ALS. They are totally innocuous issues, so how they would lead to a rare terminal illness would be most unusual. Who were these members?

 

[KimT]

Jordan,
I think seeing a neurologist will help rule out a lot of things. It's good you don't have weakness and I hope you can keep working with your doctors to figure out what is happening.