Symptoms in Right Hand, Very Worried

[apvk96]

Hello all, I am very worried about possibly having ALS. About two weeks ago I started getting twitches all over my right hand. After doing some comparing, I have much more muscle in my left hand than I do in my right (pictures below). I am left-handed, but I use both hands often so I don't see why it should be so different. My grip is also much stronger in my left hand, I tested this using a grip-strenghtener and I could do only about half the reps in my right than I could do with my left. The twitches happen other places in my body as well but they are almost all on my right side, and most are in my right hand. I can still button my pants, pick up small things, etc., but I've been finding it to be more and more difficult.

For the past couple of months, I've also been waking up out of breath in the middle of the night frequently, and I almost never wake up refreshed after a night of sleep, it's almost like I never slept at all. I also get worn down way quicker than I ever did before, and small activities like walking up stairs has me out of breath. I'm a teacher, and I also notice that by the end of my work day I'm really having trouble talking, it's like my talking muscles are completely worn down by the end of the day. I've been teaching for four years and I've never experienced this before.

Thank y'all so much for your time.

 

[ShiftKicker]

Hello there- sorry your online search has brought you here.

Please make sure to read here: Read Before Posting

We do recommend people visit with their doctors. The above link provides information, but a clinical exam by a physician is where to start. Your medical history and your doctor's observations would provide much more information and a place to start looking for possible causes for the symptoms causing you concern. A few weeks of twitching and no actual failure of function would not give a doctor much concern for ALS, but you may have other symptoms that will help point them in the right direction.

Hopefully reading the above link will help.

Take care

 

[affected]

What did your doctor find on examination?
If you haven't seen a doctor, that is where you should start. Twitching means nothing which is great news.

 

[apvk96]

Update, met with my GP who tested leg reflexes and did a quick neuro exam in which he said everything was normal. Did note the fasciculations. I'm having so many and they're all over the place, feels like worms crawling on my body at all times, to the point where my coordination is thrown off because my fingers and other parts of my body are twitching all the time. I'm also really struggling to swallow and speak, it feels like I have to fight to make certain words, and my voice is sounding nasally. With swallowing, my nose runs all the time when I eat and pills take forever to go down. He noted both grip strengths were strong but didn't test out anything else in my hand.

Meeting with neuro on 12/19. Super worried.

 

[lgelb]

Widespread twitching argues against ALS, and a rapid onset of fatigue/swallowing/speech issues also suggests another cause. When you see the neurologist, I would ask about screening for a sleep disorder.

I don't see ALS in this -- likely it is something that will improve with time and/or treatment.

Best,
Laurie

 

[apvk96]

Thank you for your kind replies. One last update before neuro appt on Monday. Swallowing issues have become worse and worse. I can only drink liquids with big gulps after big gulps, can’t sip on anything or it won’t go down. If I do sip something it takes several swallows. Food with any mushy consistency is a fight to swallow (had mashed potatoes last night and eating them felt like a workout). I talk almost entirely out of my nose, to the point where my right nostril is constantly irritated. I can’t control my voice pitch, and I run out of breath so fast when I’m talking. I can’t sleep through the night, and when I lay flat I feel like I can’t breathe. I’m spiraling, and it feels like Monday the inevitable is coming. I appreciate y’all’s support, and I will update on Monday.

 

[affected]

Great news is that ALS swallowing issues are nothing like this.
Take care, you are not displaying a single thing that would make us suspect ALS, so stop doing this to yourself.
Spend the weekend concentrating on mindfulness, hydration, relaxation and gentle exercise. Eat and drink what goes down easily only.

 

[Bestfriends14]

Ok, I'm really confused- your first post you were worried about your hand, and now you're coming on here posting about new, different non-ALS symptoms. I'm sorry, but for general health issues, you really need to bring your concerns to your GP. You are meeting with a neuro on Monday, so he's the one to bring these issues to. None of whatever is going on remotely resembles ALS, so folks on here cannot help you.

Good luck in your search for answers.

Take good care

 

[apvk96]

Hello all, since I last posted, I've had 3 appointments with my neurologist, an EMG on my right leg, a brain MRI, bloodwork, and a modified barium swallow. All were negative besides the barium swallow, which noted "mild weakness" in the back part of my tongue that pushes food down. The area between my trachea and esophagus isn't fully emptying, and it takes an extra swallow for me to clear it. No aspiration was observed, but my esophagus also isn't emptying at a normal rate. The speech pathologist running the swallow study also noted "mild upper right facial weakness." My neurologist has referred me to the Emory center for Neuromuscular Disorders, as he said he's not sure what's going on and they're better equipped to get me a diagnosis, whatever it may be. My nasal speaking symptoms continue to get worse, my right hand symptoms have seemed to plateau, but now I'm starting to feel them in my left hand as well. The clean EMG on my right leg gives me a little hope, but it's disconcerting that he didn't perform them on any other areas.

I am really worried, and am unsure what to do while I wait to get scheduled at Emory.

 

[KimT]

I know it's hard to wait for appointments. It's best to carry on and busy yourself with things that make you happy. Emory is a great place to go and you will receive the tests the doctors believe are appropriate.

The problem will focusing on symptoms is that we notice things we wouldn't notice. Your brain and body are on high alert and this in itself can cause symptoms to worsen or even new symptoms to appear.

In the meantime, take very good care of your health. Drink lots of water, get good sleep each night, eat healthy food and exercise each day.

Emory will sort out everything for you.

 

[affected]

It sounds like you have been referred to the best place. Hopefully you get a date soon.
I agree that all the things you can do in the meantime around your general physical and mental health are going to make a lot of difference.
I know that while we were in the gaps between new referrals (often a month or two gap), we focused on living our best life as much as possible. I'm glad we did.
No matter what they find, you won't get today back.

Let us know how it goes.

 

[apvk96]

I received good news today, I had an EMG done on my left leg, right arm, and tongue, and everything was clean, as was the nerve conduction study. They mentioned as a young former athlete I could have something called Functional Neurologic Disorder, which she said is common in people who have been through a lot of stress like myself.

I guess a final question I have for y'all is that this completely rules out ALS correct? Because even if it started in my breathing muscles or another untested location, it would still likely show on the EMG?

Thank you so much for all of your support.

 

[Nikki J]

Given all your symptoms the emg plus the assessment of your doctors would rule out ALS yes. Functional Neurological Disorder (fND) is a real disease that responds best if treated early. You should see a specialist in fnd to get an assessment and treatment plan. There is an FND clinic at mgh where I go. Its director is David Perez. You might google him to see his videos. Also search this subforum for posts I have made about fnd. Hopefully Emory also has a specialist in fnd

 

[apvk96]

I will definitely look into him and your posts, thank you so much for your help!