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dcush1992

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Learn about ALS
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Manteca
Hello everyone,

I posted in this forum earlier this year in February about my symptoms, which I thought resembled the early stages of ALS. Specifically, I felt a sensation of weakness in my left hand that seemed like it was spreading to my right hand (I'm right-handed). My voice wasn't working right, I didn't feel like I could articulate words clearly. I'm 25 years old now, otherwise healthy. I wanted to give an update because I am very scared of the possibility of this disease, and I am incredibly grateful for any perspective you have to offer. (I apologize for opening another thread, but my last one was closed)

Since my last post in February, I'm very concerned that my symptoms are worsening. The muscles in my left hand/fingers feel weaker than they did before. I feel like they're moving slower than before, but the most concerning thing is what looks like atrophy to me. When try to apply force or pressure with my fingers, the middle section of my fingers bend down. It looks like they just give out and they don't apply any strength or force. When tapping my fingers, I can't get them to move as "fast" as I want them to. Occasional twitching in my fingers, and they feel weak afterwards. I can still curl and stretch them, but I've noticed that I can't extend them like before. For example, when typing, I feel like I'm relying much more on my index fingers to type, otherwise I'm constantly making mistakes (most of all thinking I'm typing the write key but not).

My voice feels like it's getting quieter. I have to use more effort to produce the same volume as I did before. My tongue feels more stiff than before. I try to always stretch it to see I can get it to reach the same part of the roof of my mouth. No one has noticed or pointed out any abnormalities in my speech. I'm so thankful for my wife. I have asked her so many times throughout this year if anything sounds wrong with my speech, and she has said no each time. I've been going to a speech therapist on a semi-regular basis this year, and she has noticed "tension" in the mid-range of my voice, which I feel as well. I flat out told her in the beginning that I have a fear of ALS, and she said that while she was not a neurologist she did not see any indication whatsoever of ALS-related difficulties. I'm wondering if at that point, any difficulties were not pronounced enough for her to notice anything.

I've been seeing a neurologist about 3-4 times this year. He has done reflex tests, brain MRI, EEG, and never once brought up ALS. I have been afraid to ask lest I sound crazy. He knows I have had a problem with anxiety, and asked if that might be causing my health problems. However, the thing that scared me the most occurred in my last visit. He did a grip test on both of my hands, and had done one previously a few months ago. Originally, both hands measured 60-65. This last time, my right hand was still 60 but my left hand was 30! He tried to get me to do it in different positions, but it was roughly the same result each time. He did more strength tests and didn't seem to notice anything wrong. I'm getting a neck MRI and and EMG done on the 28th. Since then, I've been so scared that the weakness I've been feeling has been objectively measured for the first time after all this time. I'm so afraid that my fears are somewhat grounded.

I apologize for the super long post but I wanted to get everything out there. I have tremendous respect and admiration for all that you guys are going through. If anyone has any insight into what I just said, I would be very grateful. Thank you.
 
Hopefully the EMG will give you peace of mind and clear you of ALS. Your description of symptoms does not suggest ALS. The hand weakness could suggest tendinitis or other musculoskeletal issues. Your voice issues could suggest some gastroesophageal reflux. Anxiety can add to all your symptoms. Best of luck with the EMG and please let us know how it all turns out.
 
Feel, Feel Feel. ALS has no sensation of weakness, muscles just don't work. I think the term weakness needs to be dropped from the symptom list for ALS. Paralysis is a more accurate term. I FEEL fine, I just have muscles that will not contract.
Vincent
 
Thank you guys for your feedback. I can’t tell you how much it means to me. I’m trying not to think about it too much, since I know worrying makes absolutely no difference. I am nervous about getting needles stuck in me, but I know it has to be done to find out what’s going on. I’m praying for all of you, and please keep me in your prayers if you can.

Also, please don’t delete this thread so I can post an update after my test is done. Thank you.
 
To let you know- if a thread is inactive for a certain period of time, it is closed automatically. Mods get a bad rap for closed threads, but usually it's an auto-function performed by the forum
 
Like Vincent says muscles just don't work. I can not speak but I can make noises as loud as I ever did, but I can not form words.
Al
 
I admire all of you for your strength in the midst of this horrible disease. I am relying on my faith more than I ever had before, praying that whatever I'm going through is not as serious as I'm making it out to be. Thank you again for speaking words of wisdom. I can't tell you how much it means to me.

Just out of curiosity, approximately how long before a thread is closed due to inactivity?
 
Honestly, I don't think anybody knows how long the system leaves a quiet thread open.
 
Hi everyone,

I wanted to update you all on the results of my EMG, which was done today. I went in for sure thinking there was something seriously wrong with me. I felt it, I believed it, and I convinced myself of it. Today my neurologist did a nerve conduction test on both arms and an EMG on my left arm, which I had been complaining where I felt the most weak. I truly, honestly, was prepared for the worst.

As my neurologist began the EMG, I finally confessed to him for the first time my fear of ALS. In the year that I’ve been seeing him, I had never mentioned it. He point blank said that “this test will show if you have it.” Not very reassuring, but I went in hoping for the best. He did the EMG, and said “everything is normal.” I was so relieved to hear him say that. I confirmed that the test didn’t show ALS, and he said it didn’t show anything. It was just normal!

I’ve spent the last year and more worried and convinced that I had ALS. I knew, just knew, that my “symptoms” proved it. Now I only have to convince myself the opposite, which is much easier to do now that I have these results.

I want to thank everyone on this forum from the bottom of my heart for your willingness to answer my questions, and for your patience in dealing with all those who are afraid they have this terrible disease. The patients and caregivers that deal with ALS on a daily basis are heroes, I salute you. I will keep you all in my prayers.

Also, I would like to make a donation to an organization that provides good services and research for ALS. If anyone can recommend an excellent charity, please do.
 
Thanks for the update, and of course always glad to hear about a normal EMG. It always helps future readers when they can see how scared you have been and how your fears have been allayed. I hope also that this shows you and others that you can be honest with your docs, which often saves time and anxiety.

As for donations, which is a nice thought, I am sure the ALSA chapter in your area would be appreciative, as would these very Forums (note the red "Donate Today" button at the top left).

Best,
Laurie
 
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