ALS Concern

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New member
Dec 28, 2022
Hi All,

New poster here on the forum, nice to meet you all. Just to start having read around these forums for a while now I am humbled by the bravery and compassion in the face of adversity. I’m mindful of wasting your time as it is clear you all have far more better and important things to do but I am at the point now where I am going to have to do something that I really didn’t want to do - bother this community with my anxieties.

I’ve had OCD for around 14 years, mostly related to health. Had its ups and down but i am at a particularly low point at the moment.

It all started when i noticed a dent in my left thumb area. This sent me down the rabbit hole of MND. My arm felt weak which led to constant strength testing. The twitches began. They occur more on the left side of my body but can crop up anywhere. They are not continuous and last anywhere from seconds to maybe a minute. After a while my girlfriend basically forced me to the docs because i was spending all day and all night locked away strength testing, checking for atrophy and scouring for twitches. GP went through my history and gave me a neurological weakness test, said he could find no clinical weakness and looked at my thumb dent, concluding that it wasn't atrophy as depending on my thumb position it could appear or disappear and was almost certainly how the muscle looked. He said he had no evidence of any physical issue and therefore further testing was not necessary and would just increase my anxiety. I agreed and i said i'd carry on with my weekly CBT sessions.

Fast forward a month and i was back in the same place. The arm feeling weak alarms me but it performed exactly the same as the other arm when I test it and when the above mentioned GP tested it.

Went back and saw a different GP, explained the above again. He did another neurological exam, including extra tests, checked my cranial nerves, did my reflexes, etc. Said the tests were perfect and he can find no evidence of clinical weakness or anything abnormal with the reflexes etc. At this point and never having been on medication in all my 14 years i asked about the medications i could go on and was prescribed 50mg Sertraline to combine with my CBT.

My left shoulder, arm and hand feel shaky, like trembling and I’ve noticed it is clumsy compare to my right hand. Something just doesn’t feel right about it. When I look at my left arm I can see areas that are smaller than my right, the same areas appear on my right arm but aren’t as noticeably small.

I’m waking up 3 times a night thinking I have this awful disease and I’m not going to see my young son grow up. I struggle to eat and drink properly.

The first question is obvious considering this sub forum - could this be ALS?

The second question is - undoubtedly GPs are well trained but would they be able to spot potential ALS as I understand in context it is fairly rare? They always also seem to mention my age as a 33 year old male that although I could be possible it is vanishingly unlikely, but I have seen stories of younger people than me being diagnosed.

Would their basic neurological tests pick up something wrong? Or should I see a neurologist despite their examinations?

Thank you,
I'm sorry you are experiencing this.
I can assure you that these things are not indications of ALS, not at all. Your doctors are correct and telling you the truth.
Go to the top of this forum area and in the resources read the item named READ BEFORE POSTING.
It will give you all the detail on why dents, twitching and shaking are not indications you are dying.
I hope you get back to health again soon, follow your doctors advice.
Hi Affected,
Thank you for replying so quickly.

I’ve read the sticky, thanks for pointing it out. I should be more observant.

I have further questions. Obviously no need to answer if you don’t think it’s a good use of your time.

In regards to the ‘failing not feeling’ advice. Is it just one day you can’t lift your arm, do up a button or grip things fully? Or is this a gradual process where one goes from feeling weak to failure? As an example at the moment I fumble a bit with my left hand and sometimes can’t grip the bedsheet and pull it up properly first time but at second attempt I can complete that action eventhough it still feels weird.

In relation to that is there no weird/off/strange feeling to whatever is affected? Does it feel just the same as it always has but now doesn’t work?

And lastly, I’ve been worrying about this for three months now. Is the passage of time evidence against my worry. If it was this what progress would I expect to see in that time? Moving to other limbs/areas as well as the original hand/arm? Would some of the limb definitely be paralysed by now? I appreciate it is different rates for everyone but surely there is some sort of general progress I would expect if it was this.

Thanks again,
1. You don't go from feeling weak, you find you are weak and only a doctor can test you and confirm clinical weakness.
2. Yes.
3. Yes, ALS is a progressive disease.

All the best, please discuss your concerns further with your doctor who can then examine you as you describe a concern in any area of your body.
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