Are these onset symptoms of ALS?

Status
Not open for further replies.

Natewheel

New member
Joined
Dec 4, 2020
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
TX
City
Dallas
Hello,

Thank you first of all for allowing this type of discussion on your forum. I did read the thread ahead of time discussing the disease and it's symptoms. But I am having a lot of worry in my case and would still like to hear other opinions based on experiences. I am a 33 yr old male who has always been very active. Although covid has changed that this year.

I'll jump right into the symptoms I'm currently having now for about a month. I started with a specific muscle twitching in my arm very rapidly for about a week. Was worried and went to doc thinking I have als or ms. They said not to worry als starts in the legs and works is way up (I know isn't true) Then I developed terrible internal tremors that could not be seen but felt like my body was vibrating throughout the entire day and made sleeping very hard as well. I started getting other twitches all over my body but the bicep stopped. That was in my right arm. Now I have a lot of them all over in my legs, butt, arms, sides, stomach, and even near my temples. My mouth now twitches every time I open it or smile. It is very concerning and my tongue doesn't feel right and wants to push in between my teeth. I have also had random acid reflux that was severe and started last year and it's affected my voice. I have shaky hands and finger tremors. The original doctor told me to look into thoracic outlet syndrome because my arms go numb when I sleep a lot of times but not sure how that affects my face and everything else. She said it looked like my thenar had some atrophy so of course I look that up and it's common with ALS. My legs and arms muscles quiver and shake when flexing then in certain positions as well. It is hard for me to say how much weakness I have now because for 9 months now I've been working from home and changed my lifestyle completely. I used to workout and play basketball but due to not feeling well and other foot and knee injuries also on my left side I haven't been. I sit at home and barely go out. But I do feel very shaky now. I was leaning over to adjust the water in my shower and noticed both of my leg muscles going crazy and shaking.

I saw a neurologist who just said I need to be tested and I'm scheduled for all of the MRIs, emg, etc. But I am wanting to know if this sounds common for it to affect so many different areas of my body all at once? It does seem a lot of it is more prevalent on my left side. My wrists pop and grind so much now. And the facial symptoms at very troubling. Any thoughts on this are greatly appreciated. Thank you in advance.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,398
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
No, ALS does not typically present as you describe. I am glad you're working with a neuro and I would also make sure you're being monitored by a good internist who can make sure your GERD and any other issues are adequately treated.

While all that is going on, understanding that you have injuries, I would try to get out, even if it's for a walk around the block. Extending your muscles past the seated position can help with shaking under several scenarios. If your sleep is still poor, that can affect everything and I would film yourself in sleep to see if there are breathing difficulties or excessive movement, to discuss with your doctor(s).

Nutrition (including real food vs. junk) and hydration are also important and often overlooked when you are spending more time at home.

Best,
Laurie
 

Natewheel

New member
Joined
Dec 4, 2020
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
TX
City
Dallas
Hello Laurie,

Thank you for your quick response, it is greatly appreciated. The doctor did also order a sleep study test as well. Luckily the acid reflux isn't as bad as it was. Which it was really bad and caused 24/7 discomfort and kept me out of the gym as well from nausea. I'm a very active person who used to run spartan races and play basketball 3 times a week. But the heel injury had kept me from all of that. Left heel and left knee. Acid reflux had left side twitching and swolleness near colon. My voice still is affected. My left side neck under my jaw cramps when yawning. Tremors started in my left ring finger and now are in whole hand and sometimes on right. Both hands feeling tighter, wrists popping and hurting, and seemingly atrophied left thenar vs right. I still have muscle twitching all over but mainly in
 

Natewheel

New member
Joined
Dec 4, 2020
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
TX
City
Dallas
Hello again,

I apologize I accidentally cut off part of my last post so I'm sure it seemed a little strange and I didn't get my questions across. I have since had an EMG test done yesterday and he told me that he didn't think I had signs of ALS. I am still trying to get those results to share. But I'm concerned that he only tested my right side when all of my symptoms are on the left mainly. That's because the first crazy twitching I had was my right arm. But since then everything is predominantly my left. My triceps shoulder area is constantly twitching. I have tremors in my ring finger and sometimes erratic movement in my thumb and index. My thenar seems smaller there and I can visibly see tiny muscle spasms over my thumb when raising it. I have had more facial discomfort and muscle quivering around my mouth. Fasiculations in my side, legs, and even face (lips, temples, and above ears).

I'm curious if it matters that he only tested one side? I know als is about failure. But is there not a progression where things are wrong before it gets to that point? I have heard stories where they had fasiculations for months before having weakness and didn't think much of it. Is it common to have fasiculations and other symptoms before noticeable muscle failure? I am a decently strong guy so would it take longer for my muscles to fail? I know I want to take doctors advice and am doing my best. But when symptoms still progress, they didn't test my most affected side, and still offer no help or reason as to why this is happening... your mind can still wander. Thank you so much in advance for all of the support you provide here to so many!
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,398
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
An EMG in someone with ALS is typically abnormal in most muscles tested, including ones that you think are fine. That is why they don't have to test your most affected side.

Months of fascics with nothing else wrong is not typically how ALS presents. But it doesn't matter either way. For you to have symptoms related to ALS, many motor neurons would already have to be dead, so how long it took you to that point would be irrelevant to the EMG results.
 
Status
Not open for further replies.
Top