Perceived weakness and twitches

theScientist

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Dear all

First of all I would like to thank you so much for the incredible effort you put in this forum. That’s not to be taken for granted. And at the same time I apologise for even coming up with the idea of posting here (I really am fighting with myself). But here I am, yet another worried young man (26 years) asking for help with his symptoms and fears. As a scientist I try to see this whole presentation objectively. I read some peer-reviewed articles and did the maths and the chances to be diagnosed with ALS at the age of 26 are really, really low. But sometimes I can’t see things as objectively as I’d like to see them. So here's my story.

I read the sticky many times (it’s a great help and clarifies some of the myths and wrong facts out there!). Nevertheless I think that portraying my situation and formulating my questions helps me dealing with my current situation.

Phase 1: Numbness and vision problems
I first noticed some changes earlier this July. It started with a numb feeling in my left forearm, fingers, and shoulder. A couple of days later I noticed vision problems and pain in one eye (could have been optic neuritis). My GP referred my to a neurologist who did an MRI and some other tests for multiple sclerosis. I was really happy that this disease could be ruled out.

Phase 2: Facial weakness
Then, roughly two weeks ago, weakness in my face started. I had a strange feeling in my left cheek and smiling or talking for a longer time became quite exhausting (the face felt "sore" after a longer discussion). Furthermore I thought that my speech became slightly slurred. Since then, the face has improved and worsened and improved and worsened (but never got worse than the initial presentation).

Phase 3: Muscle twitches
A couple of days ago, another symptom appeared: muscle twitches. Almost all day long some muscles would twitch intermittently (especially in the limbs) with a (perceived) peak when I lie in bed right before sleeping. I started taking some additional magnesium but currently my digestion doesn’t tolerate it that well. But I think that the twitching has improved (at least slightly).

Phase 4: Limb weakness
Furthermore I think that my arms, hands, and legs (especially the right leg, which is my "stronger" leg) have shown some signs of weakness in the last few days. I know that ALS is about failing and not about feeling and put this way, I am quite sure I don't have ALS. I don't have any functional losses. The problems I have encountered are:
- Leg: weakness of the mentioned leg when e.g. getting out of bed and standing on the right leg first, sometimes a strange feeling that my right thighs can't hold my weight anymore (knee giving way)
- Arms: quicker exhaustion of the arms e.g. when holding something heavier or when operating the steering wheel of the car for a longer time
- Hands: weaker grip and soreness in thenar muscles (both sides)

My reasoning against ALS
- All in all the symptoms do not really point towards ALS.
- First and probably most important argument: my age (and a lack of familial history).
- Most of the symptoms are sensory and as mentioned in the sticky, ALS is about failing and not about feeling.
- The symptoms appeared too quickly to be related to ALS (~ 1 month).

My questions and concerns
- Do you think that my reasoning makes sense? I would be happy to include some additional arguments against ALS in my collection.
- Concerning weakness: is there some sort of precursor to weakness? I imagine that some parts of the thenar muscles might be broken but some other parts might still work fine but get exhausted (and sore) because they have to work more?

Thank you very much for your help!
 

lgelb

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Asked and answered, Scientist. Not all electrolyte or other nutritional deficiencies show up in labs. If Mg helped, you might try a more digestible/absorbable form than what most stores sell.

Come-and-go eye pain (and blurriness, esp. if you wear contacts) frequently relates to allergies/sinus, which can degrade sleep quality and cause/worsen your other issues. You might try a nasal steroid. You might also record your breathing on your phone overnight to see if you are congested. Stress, exercise and your leisure time are all areas to look at. I presume your GP has baselined your strength, so you can track it if there are any concerns.

I don't see any reason to worry about ALS.

Best,
Laurie
 

theScientist

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Laurie, Karen, thank you very much for taking time to read through my post. It's great to read that you seem to approve my reasoning! :)

@ Laurie: The eye issues haven't occurred again and I don't worry about them anymore. It's really mostly the "pain" and weakness in my arms and hands after using them for a while that worries me... I've just poured water into a pan with my arm stretched out (the total weight was maybe 4 kg/8 pounds) and my arm started shaking really badly.
 
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Bestfriends14

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As mentioned above, what you are experiencing has nothing to do with ALS. Again, and again, pain points AWAY from ALS. As you said you read the sticky, then you know that ALS is about failing, not feeling. Please remember that and be grateful that you do not have symptoms that point towards ALS.

Best of luck to you and do take good care.
 

affected

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I've just poured water into a pan with my arm stretched out (the total weight was maybe 4 kg/8 pounds) and my arm started shaking really badly.
that is never a symptom of ALS. Not being able to pick up the pan however ....
 

theScientist

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Thanks Bestfriends14 and affected for the helpful and reassuring words! And also thanks again to Laurie and Karen!

I have two more appointments with the neurologist (lumbar puncture, additional blood tests) still as an aftermath of the multiple sclerosis suspicion (until now there was just the MRI). Probably I'll ask the neurologist then about my new symptoms, just to be sure. Maybe he/she is willing to schedule an EMG.

It's still quite strange that all of a sudden I seem to have so much trouble lifting heavier weights and I definitely want to find out what it is (not ALS, of course).
 

theScientist

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Hi again

Today I had another appointment with the neurologists (hopefully my last one for a while) and just wanted to report.

The lumbal puncture came back negative -- nothing concerning was found -- so did the MRI. Then they made another clinical examination. The neurologist noted brisk reflexes (on both sides, basically everywhere) and a slight ankle clonus (exhaustible, non-sustained, maybe 2 or 3 beats), also on both sides. The rest of the examination was good (no weakness, no balance issues). Later on, a senior neurologist joined for a second opinion and both thought that for now no additional tests would be necessary (explicitly no EMG).

My symptoms come and go (which points away from ALS) and I think they might have ceased a bit in the last couple of days (but I'm not completely sure). However, I sometimes still have faster exhaustion (mainly in my face after longer discussions or smiling for a while, but also in my arms when held in certain positions), twitches (no specific pattern, all over the body, varying in frequency), and tremors (especially on exertion, for example when holding something heavy).

Now I'm balancing between living with the neurologists verdicts, and asking them if I could still get an EMG. I'd prefer option 1 (and I think I should be capable of accepting) but still wanted to ask for your opinion.

Thanks a lot!
 

KarenNWendyn

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You don’t need to be here. Two to three beats of non-sustained clonus and brisk reflexes is within the realm of normal. Your story doesn’t suggest ALS in the least. Furthermore, your neurologists are not concerned. And neither are we.

Time to let it go. Life is too precious to waste it chasing a disease you don’t have.
 

lgelb

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Second that. Since you mention lifting, I would make sure you are doing all the warmup/cool-down stretches that calls for. All the best.
 

theScientist

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Hi Karen, hi Laurie,

thank you for your opinions! I will take them to heart! I've decided to stop worrying and thinking about possible diseases for the next couple of weeks and see how the situation develops. But I think that ALS is off the table. And additionally I want to start doing some more sports (I've become slightly rusty ;)). Today was once again a good day with no symptoms on my limbs -- only the weakness in the cheek muscles after smiling/talking reappeared. I had the idea that this might be related to a 'dental' problem (like e.g. teeth grinding or tongue pushing against teeth) and will look into that.

I wish the two of you all the best! And again: thanks a million for your help!

P.S.: I will donate another amount to the forum here and to a local ALS support community!
 
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