Symptoms for the past 3.5 years.

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JackRosen1111

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Learn about ALS
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State
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City
Philadelphia
Hello,
I am a 40 year old male from Philadelphia.
I've been having the following strange symptoms for the past 3.5 years. I would like to know where this is consistent with ALS.
1) I have the sensation of weak legs. I was diagnosed with Femoral Acetabular Impingement (Hip Impingement) and flat feet on the left leg. This is causing nerve pain in the hip and foot. Can it be that the leg weaknesses caused this? I can still do basically everything but I feel I will fall one day.
2) My left arm feels weaker than the right. I get a sharp 1 sec cramp in my forearm when I work it out. This has also been going on for 3.5 years. Would this happen if someone had ALS? The anticipation for something to fail or does the person not feel anything and it just fails from one day to another?
3) My lips and tongue at times don't function properly particularly when it's cold outside (winter) or when I am stressed and anxious. Some other days, everything is good. This also has been going on for 3.5 years. Also, my vocal cords hurt when I talk for too long (like screaming at a concert). After resting, I feel okay but this is recurring.
4) I have twitches body wide. This has been going on for 3.5 years.
Thank you for your reply.
 
Hi Jack

1. no, that is not clinical weakness which we see with ALS
2. again no, that is not clinical weakness
3. no, ALS doesn't come and go for years, neurones die, that's that
4. twitching means nothing

Did you read this post yet? It will give a thorough answer to all your questions.

You don't even mention seeing a doctor, nor what they have said. I'd strongly suggest you seek medical examination and advice.
 
Hello Affected,
After feeling weird symptoms in my arms and legs 3.5 years ago, I saw a neurologist that performed many tests including an EMG. At the time, the neurologist said my left leg was abnormal and my left arm was slightly abnormal. They wanted me to do a spinal tap but I was so scared from the entire experience that I just left and never continued. I never asked for a copy of the EMG. I continue to see my family doctor and continue to complain about my symptoms but he continues to says it’s nothing. He says it’s impossible it’s ALS after this long. All my bloods are fine. The only thing that is off is the FAI in the HIP and stenosis in the neck. I’m just looking for some reassurance that there’s no way that:

1- it could be ALS if it’s been this long and I can still perform every activity despite what I mentioned in my first post.
2- typically you wouldnt go to a neurologist (if you thought you had als) if something wasn’t working. I went because of weird sensations in my arm and leg.

Finally just to be clear, PALS wouldn’t have as a first symptom their foot feeling like it’s broken or their foot falling asleep when wearing shoes or flat feet right? Also, like I mentioned before, My lips and tongue don’t move properly when I’m stressed or when it’s super cold outside. Also, it someone feels like I need extra effort to actually say words. Again , up and down.

Thank you for your time. Im a bit all over the place at the moment.
 
3.5 years of symptoms without impairment is not ALS, no. Nor are the first symptoms as you describe -- those are feelings. ALS is failure to be able to perform activities.

People go to a neurologist for many reasons, but 3.5y after seeing one if you are still worrying about ALS and still walking, talking, and typing, you have wasted a lot of worry. I would stay connected with an internist [maybe not your family doc) who can baseline your strength and advise if you need further workup. And I would see an orthopedist re your hip and a podiatrist who can help you address your flat foot in the context of your hip.

Address these very treatable issues and get on with your life, make sure you're nourished, hydrated, managing stress, and sleeping well, and stress/cold are less likely to bother you as much.

Best,
Laurie
 
You are correct - this isn't how ALS works, but there are many other things that could be going on, most of them treatable and not terminal. Let us know how your appointments go for sure.
 
Thank you for your input. I have a follow-up with my neuro that I haven’t seen next week. I will keep you all informed of the developments.

May I ask one question?

Would someone typically go see their PC or neuro at first when someone isn’t working rather than having a sensation… meaning you wouldn’t go to the doc if everything was working but just feeling tired…because those are all feelings. Because like I said. Every for me is feeling.. I can still do everything. When you here some people have carpal tun el symptoms but it turns out to be ALS… is it because something is not working or because they have a weird sensation in their forearm and they feel week?
Also, would connective tissue disorders like Psoriatic Arthritis or spondyloarthristis cause an abnormal EMG? I’m curious.
Thanks
 
The EMG is used to diagnose a huge range of conditions, not just ALS.
Of course you would see your doctor if you are fatigued - there are many treatable causes for that.
But just like not every headache is a brain tumour, not every twitch, failing muscle or atrophy is ALS.

It would be good to have a list of questions with you to ask the neuro next week so you can get answers in context of your own situation. Then you can ask what is next.
 
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