Scared

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lss

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Jan 23, 2023
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Learn about ALS
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US
I had been feeling general fatigue and some muscle weakness since August 2022 but thought nothing of it. I have alopecia and was loosing lots of hair at the time so I just thought I needed more rest and have been under a lot of stress. By October I started feeling like my walk was unbalanced and my right foot kind of hurt to walk on. I noticed it seemed smaller than my left foot, like the padding was gone.

I really didn't think much of that either until it happened to my other foot as well. I made an appointment with my primary care doctor in December as I was having difficulty walking at this point and my ankles felt weak. She noted that it appeared my feet had atrophy and decided to do some blood work.

When I went back to her two weeks later to get blood test results I was having some difficulty with swallowing and my blood work was clear. Got sent to podiatrist and for barium swallow and jaw x-ray. My jaw x ray was clear at my last appointment but I am now having atrophy in my hands and weakness in both arms.

My primary care doctor tested my reflexes and strength in arms and legs. She looked at my hands and said muscle looked to be wasting? My veins are super prominent in my hands and wrists and the muscle between my thumb and forefinger seems gone, my grip and looks and feels different.

I know it's about failure and still being able to do things with difficulty isn't ALS. But I'm not sure what else causes visible atrophy in your hands and feet along with muscle weakness. I can still use my hands and feet, but they are very weak. I haven't been eating as much due to the difficulty when swallowing.

This past month I started dropping things with my hands and having a hard time writing. Walking, my ankles are shaky and sometimes feels like my feet could fall out from under me. Can this happen this fast? Would both hands and feet be affected by atrophy this quick? I felt the weakness in my right foot before noticing the atrophy but in my hands it feels like the atrophy came first and that's when I started to not be able to grip things very well.

Thanks for taking the time to read this.. I'm just really nervous leading up to this appointment. I am amazed by all of you on this forum and the strength you all have.
 
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Hello and so sorry you find yourself here.

You're correct in thinking the overall spread of symptoms in ALS is not usually that quick. There are many conditions that can cause the issues you're experiencing, so it's good you're under the care of a responsive physician. If you review the "Read Before" link, you'll see an incomplete list of various conditions that share some similarities and symptoms with MND.

I understand how difficult it must be to wait while you are experiencing changes, but it's not entirely clear whether this is a neurological issue or something else. Maybe I've missed it, but when is your next appointment? With whom?
 
Hi, thanks for taking the time to read and respond. I appreciate you.

It does seem really fast to me, I was perfectly fine just somewhat more fatigued 6 months ago and now I'm having difficulties with my hands, feet, and swallowing. I did check out the read before link, I just wasn't sure if anything else would cause the atrophy along with weakness.

My next appointment is with a neurologist this Friday. My doctor referred me after our last visit. Sorry, don't know how I left that part out. I'm so nervous.
 
What was the result of the barium swallow?
 
Hey Affected and Shiftkicker, I did not get results back on Barium Swallow yet, I should have them back next week. I saw the neurologist today and he ordered an EMG on both my arms and legs, I'm scheduled for that next week as well. He also wanted me to get an MRI and more blood work (b12, creatine kinase, and myasthenia gravis panel).

I asked him straight up if it could be something serious and he said it could be but needed to do more testing. I'm a 33 year old female, so I'm assuming he wouldn't want to scare me and jump to ALS on first visit. I went over my history with him and mentioned I had the flu at the end of November so he did say Guillain-Barré syndrome was something he wanted to check for. He noted mild atrophy and weakness and some slight balance issues. My reflexes were okay.

I know there are other things this could possibly be but I'm really worried with all the symptoms I have with the inclusion of atrophy especially in my hands. I didn't think I had any twitching either until the neurologist mentioned it and now I notice, not real twitches but I feel like pulses in certain muscles when I'm sitting still. I saw it in my hand today.

The chances of having ALS never even crossed my mind until I got the referral to the neurologist and realized what my symptoms seem to match up with. I never even thought it when my symptoms first started because the chances of that are rare, but now I'm terrified every day. I'm a single mom to my daughter who's only 5 years old, I just want to know I'll be okay for her. Praying my Barium Swallow and EMG are okay...
 
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Try not to get lost in that rabbit hole.

ALS at 33 is even more rare than ALS ever. Twitching means nothing.
There are so many things more likely, and I am sure you know.
If you didn't read this post before, do so now.
Then stay off the internet scarefest and let your doctor do the work.
Spend every moment you are worried either with your daughter or creating ideas of things to do with her the next day.
Way better use of that energy.

 
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