20 but still Mortified of ALS

[Austin Sayre]

It all started a year and a half ago. I had muscle twitches in my legs, I couldn't sleep, and school became very difficult. My arm and my leg were both weak and I had twitches at night(constantly). I saw my neurologist and got an mri and everything turned out fine. Recently as in November I woke up one night and my vision was super blurry in my right eye. I looked stuff up and people said it could be a symptoms of a stroke so I freaked out. I continued going to the gym and carrying on with life though. But in the past month I have been having episodes where my face would go numb and also as of the past couple of weeks I have had weakness in my right arm and leg. Please help me!! I am terrified of ALS.

 

[Austin Sayre]

I should also mention that I have a history of several traumatic brain injuries which worries me even more.

 

[Austin Sayre]

Lately I have been losing my appetite. I should also mention that I haven't had an emg yet. I have only had blood work and an mri with contrast. I am going to see my Neuro again soon for the first time in a year.

 

[Atsugi]

Austin, that's probably the weakest case I've ever seen for ALS.

Please explain what you mean by weakness.

PS: Don't listen to advice from people who have no experience with ALS.

 

[Austin Sayre]

My arm and leg begins to cramp up after a short amount of use. This past week I have pretty much been bed ridden and have not done much at all. I also had a horrible episode of vertigo yesterday to where I feel nauseous. Anytime I use my bicep my shoulder wants to raise up in the air do some reason. My twitches are so bad at night that they wake me up every few hours.

 

[Austin Sayre]

Sorry, I forgot to tag you in the last post.

 

[Atsugi]

So what weakness do you have?

And why are you in bed so much?

Would you say you have an overall tired, weak, exhausted feeling all over your body?

 

[Austin Sayre]

Just in my right leg and arm. They do not feel like they are working right. I also get very itchy and tingly all over my body for no reason.

 

[Atsugi]

Itchy and tingly have nothing to do with ALS. And when an arm or leg does not "feel" like it's working right, that doesn't point to ALS, either.

You're in bed because you're depressed and worried, am I right?

Stand on your toes, walk backward and forward. Stand on your heels, walk backward and forward. Stand with your arms stretched out, with palms up. Now move the arms all the way up and all the way down. Now do it again, this time with your palms down. Put your hands in front of your face and make two fists, one finger at a time. Finally, give me a squat one time.

How did it go? Don't care how it felt. Just care if your muscle could actually perform the task.

 

[Austin Sayre]

Yeah I could. I will ask my doc about an emg. Is it pretty accurate when assessing ALS?

 

[Atsugi]

Yeah, the EMG is considered the gold standard. But it doesn't diagnose ALS, it's just one clue of many.

I don't know what you're dealing with there, but it really does NOT look like ALS.

The first place to go would be your family medical doctor. You can probably get in to see her quickly, so you can get this out of your mind. She can do a simple set of strength tests and determine how to proceed from there. Tell her everything about every symptom. But in the meantime, I don't see any reason to be worried about ALS.

 

[Austin Sayre]

Thanks a lot Mike! I hope all is going well. I have noticed that you post replies very promptly to everyone's questions. I really appreciate your help! I will stay in touch.

 

[Austin Sayre]

Alright so I am back and just wanted to get some more insight. I still have an abnormal heavy sensation in my right shoulder.I also still have pain in my right hip and some numbness although it has been improving.My twitching continues all over my body as it has in the past 2-3 years. I don't remember how long exactly. I got an ncs/emg on both my arms and it was abnormal and suggested mild carpal tunnel. Then I followed up with my pcp and got my reflexes tested except for babinski and everything was normal except that I had Hoffman's sign. Would and emg be able to differentiate between cts and MND? I am still very worried as my symptoms have not subsided.

 

[Austin Sayre]

My pcp ordered an Mri of my Cspine as well. I am tired of thinking about this crap all time. It is very stressful to be a student that has to prepare forb grad school and not know what is going on with me. The fact that have have a background with several concussions and the fact that football players seem to get it more offer scares me more. I just don't know anymore.

 

[lgelb]

Austin,
Yes, EMG/NCS clearly differentiates carpal tunnel disease from MND. Happy to hear that your R hip is improving. Improvement doesn't happen in MND. Twitching over 2-3 years with no clinical weakness is not indicative of MND.

Everything you have said and reported suggests that you are in the clear, so I'd keep prepping for grad school and focus on symptom management with attention to your diet, stress and stretching, bodywork like Pilates that elongates the muscles, massage, heat, magnesium lotion on the affected area (though not with heat at the same time

And if you think it's unfair that you have to deal with twitching and hip issues, you might consider instead that many of the people reading this are dealing with quadriplegia.

Best,
Laurie