Guidance Please

s12345

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Joined
May 1, 2022
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1
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Learn about ALS
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Country
US
Hello,

I am a 28 year old male with concerns about ALS. I have been to the neurologist due to a stiff neck, vertigo that went away, and numbness in my right arm that has since gone away. I will list key information via bullet points below and I only ask that anyone willing please help give their opinion on my situation. I thank anyone that takes the time to read this. The dates below are estimates

  • 3/1/2022 - back side of my neck started hurting. I would wake up in the morning and it would be very sore when i would turn my head
  • 3/9/2022 - dizziness/vertigo. It lasted about 2 weeks.
  • 3/11/2022 - realized right arm was partially numb. I could feel but there was a lack of sensation. It lasted about 1 week and went away
  • 3/20/2022 - I developed weakness in my right hand. Grip strength and I dropped many things. I have a general tiredness when doing basic things like mowing the lawn. My legs get tired from walking about my shoulders are tired from pushing the mower.
  • 3/22/2022 - saw eye doctor and they checked for inflamed optic nerves for MS - no inflammation
  • 3/23/2022 - saw GP. Ordered MRI at my request
  • 3/23/2022 - saw Neurologist because MRI showed 5 brain lesions although they are very small and scattered around the brain. She felt my neck stiffness and pain in the front and back of the neck. Stiffness has continued to move up my jaw and it has made the bottom half of my face feel tight. She ordered MRIs on my cervical and thoracic spine.
  • 4/14/2022 - MRIs show a protruding disc in my neck. Neurologist told me she thinks this is the cause of my problems and recommends physical therapy. She is not worried about the lesions on my brain because they are so small. I am not sure if that is normal to not worry about them or not.
  • 4/20/2022 - My left and right hands are weak in the morning and seem to get a bit better throughout the day as I use them. Early on, I can hardly type on a keyboard correctly.
  • 4/22/2022 - I noticed that I am having issues swallowing food/liquids. I have this sensation of fullness or discomfort behind my sternum.
  • 5/1/2022 - I still have the neck stiffness/jaw stiffness. My tongue also feels "tight". I do not have issues moving it and my speech seems okay other than my issues with pronouncing words or stumbling through my sentences. I still have either a perceived issue with swallowing or a slight issue with swallowing. Still have discomfort behind my sternum. I believe this is affecting my appetite as it seems uncomfortable to eat. I have also developed this need to cough after I eat or drink. When I cough, I cannot feel anything come up. I still have hand weakness worse in the mornings. The tiredness and getting worn out is worse than when it first started. My muscles get "tired" more quickly. I see the Neurologist again on 5/11 and she does not know yet about my tongue and/or swallowing issues. I do feel that I have all of my motor functions in terms of still being able to play my guitar, walk correctly, etc.

That is most of everything. Does anyone have any advice? I am most concerned with understanding how bulbar normally presents itself in terms of your tongue or trouble swallowing. It seems my mouth/eating issues would be completely separate from my lesions and my protruding disc. I am so sorry for everyone that has experienced ALS or has had a loved one experience it. It is a terrible thing and I believe it is great that everyone is hear to support each other.

ADD ON -

Not sure of the time frame but I also have muscle twitches in my legs and arms. They come and go throughout the day. At night when I am trying to go to sleep is when they are most noticeable.
 

ShiftKicker

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Mar 16, 2015
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4,875
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DX UMND/PLS
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06/2015
Country
CA
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BC
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Vancouver
Hi there- we ask that people read here: Read Before Posting as it covers most of what brings people worried about ALS to these forums. In it you will read that twitching is caused by many things (some serious, some not), ALS symptoms do not come and go (and definitely don't improve throughout the day) and sensory issues point away from ALS and towards something else.

Keep working with your doctors and hopefully you will be able to get some more info from them based on their tests and exams.

All the best
 

lgelb

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Lost a loved one
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My advice is to start the recommended PT and see how far that takes you. I agree it does not sound like ALS is involved at all -- my bet would be a virus on top of the spine issue. If your issues persist past PT, you might want to discuss a rheumatology referral with your GP.

Best,
Laurie
 
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