Dad with ALS, I am terrified.

[Turtle3008]

Hello,


First of all I just wanted to say thank you for taking the time to read this. I've been watching the forums for the last 2 weeks in hopes that I can find some sort of answer for what I am feeling and what my father is going through.

4 years ago in 2020 my dad had devolped a foot drop. Had tests done and after 1 year and a half of tests, and doctors/specialist visits he was diagnosed with ALS. He is currently unable to move and has atrophy all over his body. Super thin but he still talks fine and has no issues whatsoever with breathing or eating, swallowing, and talking.

I was in Guatemala last year in December to take care of him and seeing how this disease affects people really gives me anxiety.

Fast forward to 2 weeks ago and I started with this strange sensation in my forearm. Didn't think much of it until 2 days later on Wednesday when my fingers started to get stiff a little and my forearm was getting a little weaker. Towards the end of last week on like Friday my shoulder starts to feel weak. I can pick it up but damn it feels heavy.

Went to urgent care and I told them my story about my father and how usually stuff like this doesn't affect me but it's been almost 2 weeks and my arm still hasn't changed. I can lift heavy and still do what I need to do but my arm still feels heavy.

Went to urgent care did an x ray on my neck (no clue why), and some blood work for any changes in white blood cells, and or damage in my tissue.

As it currently stands, I wake up just a little tired but this is due to my horrible anxiety I feel like and nothing to do with ALS and a very heavy feeling left shoulder. My hands do not get stiff they just get tired after a little.

I have not taken any genetic tests for ALS.

Again, thank you for your time in reading this/replying. Everyone has their own things they are going through which is why I waited 2 weeks with these symptoms to say anything.


Jose Hernandez

 

[Nikki J]

Please read this carefully to see why it doesn’t sound like ALS Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms
It is extremely common for family members of PALS to think they have symptoms. Even for people with FALS and true high risk it is rare to present at the same time as a parent but you are talking about feeling weak not being weak.

Please check in with your pcp who is more appropriate to deal with your issues than urgent care

Good luck

 

[Turtle3008]

Thank you for your response

 

[Turtle3008]

Hello Nikki,

Since my recent post some new symptoms have risen up. At first my left arm was affected. Started with a weird sensation in my forearm (tightness/and fatigue) that eventually made it's way up to my left shoulder. I can pick things up but it costs me. Fatigue settles in fast and my hands and arm will shake if I try and force it to stay up.

The forearm feeling in my left arm lasted 3 days before it went to my shoulder.

As of 5/17/24 my right wrist is getting super tense and the same feeling I felt in my left arm is starting to take place in my right.

At first I thought it was a pinched nerve but now that this tightness and fatigue is affecting my right forearm/wrist what could it be?

I have a scheduled PCP appointment this upcoming Tuesday.

I have already come to accept the fact that I may have ALS. I don't have any of the cardinal signs for ALS. No atrophy, clinical weakness, and slurred speech and or eating difficulties.

Thoughts?

Thank you for taking the time to read my reply and have a good day.

 

[lgelb]

There remains no reason to think you have ALS. As Nikki noted, it is very rare for two generations to present with it only a few years apart. Nor have you described it.

Besides working with a physician to feel better, I would seek out a counselor who can help with your understandable anxiety, which affects not only your mood but your physical health.

 

[Turtle3008]

Thank you for the swift response ❤
Once I get some funds regardless of what I have I want to donate to this website for a good cause.

If you are taking the time out of your day to answer my concerns then the least I can do is support the good fight.

I believe you are 100% correct. My anxiety sky rockets the moment I feel something is off. Figured it would be worth commenting my current symptoms.




Jose Hernandez