Hello Everyone

[WellHereWeAre]

I read the introduction and the pinned topic in regards to the is it ALS questions.

I’m somewhat of a health anxious individual 33yo and I am scheduled with a neurologist but the appointment is a bit far away.

I have a couple of questions

About a week ago I noticed my finger twitching at night while holding my phone just scrolling, not a bid deal brushed it off.

Next day my arm felt pretty dead like I had just received a shot the dead arm feeling you get after a vaccine. At the same time, there was a stiffness in my calf.. within the next day or two it went into my right hand and into my right ankle as well the deadness and stiffness, a long with some twitching.

The doctor sent me in to check for a stroke CT of the brain came back clear. Blood results all good for the most part.
He did say might right hand which is dominant is much weaker on a simple strength test he did.

I have been monitoring my strength the last week - I was never an active person really but doing 15 push ups 30 calf raises and 20 arm circles in sets of 4 each day since last Saturday.

However my limbs feels off my right side does, my grip strength isn’t there and I do have twitching in my calf and bottom of my foot and still the feeling of my right side being much weaker then my left even though I’m right side dominant. My arm leg and hand right side all just get extremely fatigued really fast doing simple things.

However, I’m not tripping I can do squats or crouching down, can walk on the heels of my foot and the toes.

1. Is this something I should be worrying about as far as the ALS side? Since it’s progressive? Is that a starting point?
2. What should I be asking the neurologist for?

Thank you for allowing us to post here.

 

[ShiftKicker]

Hi there-

Sorry you have unanswered questions about your health. It's never a great place to be.

Some things that point away from ALS- symptoms moving around or quickly spreading, sensory issues such as "dead feeling". You can read more here: Read Before Posting about signs of concern and other information.

When is your appointment with the neuro?

 

[WellHereWeAre]

My appointment with the Neurologist is about a month and some change away, so a bit distant which has me just going in circles cause I just have questions that won’t be answered for awhile lol.

 

[lgelb]

When everything on one side suddenly goes wonky and a stroke has been ruled out, it's worth a hard look at your positioning in sleep, driving, work, and play, including your mattress, pillow, and overlay, and box springs, if applicable. I expect your exam will be reassuring.

 

[WellHereWeAre]

Since my last reply, I’ve had constant twitching in the lower leg and now what feels like coordination issues in my right hand. I’m noticing my reaction time is slower — particularly when doing finger-to-thumb taps — and sometimes I miss or don’t make full contact with the finger. Which is new now.

What worries me most is that both my right hand and leg seem involved, and although I’m still able to function (doing pushups, hopping, squatting, carrying my daughter, etc.), the fine motor changes feel like they’re building.

Granted this all started in my opinion super fast one day is a twitch in my finger and then within two weeks all this is happening.


I haven’t had an EMG yet — one was scheduled but got cancelled. I have an EEG tomorrow, and I’m in the process of switching neurologists, which has added a delay.

I know this may sound like health anxiety to some, and I understand that fear can amplify things — but I also know my body well, and something feels off.
If you were diagnosed, does this sound at all familiar to your early experience?
Did you still have full strength and coordination while beginning to feel like something was slipping?
I’ve felt like I’ve just been getting weaker and coordination on the right side keeps going down. Like holding things my thumbs gets a bit caught?

Thank you again for allowing me to continue to post here.

 

[lgelb]

The fact that you are performing taps to test does suggest health anxiety. And yes, super fast wouldn't even begin to describe this if it were ALS onset.

There are a wealth of systematic explanations for all this, including hypervigilance as you acknowledge could be a factor, lack of sleep, a diet that could be better, etc. I would continue to take a good look at these as your testing plays out.

 

[WellHereWeAre]

Thank you for the reply, it’s been such a welcoming thing here with everything going on and all the different folks asking questions.

I do believe health anxiety is a bit involved. As it’s something I have dealt with, I’ve never had anything major really happen in my life. So all this coming on at once I guess we’re going on week 3 now of this.

My main just concern is that it’s just in my right side, and seems to be worsening especially the coordination and weakness in the hand getting worse. Which I know isn’t anxiety related as that’s what started the whole thing.

I have been doing steady at home tests/workouts since neurology is something that’s really hard to get decent appointment in a timely manner as I want to prepared and make use of the time I do have with them. I was scheduled for MRI’s but had to reschedule that for next week cause apparently going in an enclosed tube didn’t work for my claustrophobia which isn’t something else I didn’t know I had. Haha.

But yes, thank you for the replies.

 

[WellHereWeAre]

Did some MRI’s today - all came back normal. I know that’s not really a huge thing. But it’s one step closer to an EMG.

My pinky and ring finger are just not working right and the coordination doing the finger taps is most definitely slower on my right then my left even though I’m right dominantly. We now have to wait a couple months for a follow up.

I never really worked out but after all my symptoms started I’ve been steadily doing this ever day

• Push-ups: 20 per set
• Calf Raises: 75 per set (recently increased from 50)
• Arm Circles: 50 per set
• Finger Extensions: 150 per set (fist-to-open-hand reps)
• Balance: 60 seconds on each foot

I do five sets a day. Just trying to stay active.

I’m just spinning at this point as I have no answers from the neurologist that takes 2 months to book appointments.

I just have small little muscle twitches here and there, weakness and massive coordination issues on my right hand and weakness in my right leg still.

Is the EMG the only way to rule it out?

 

[lgelb]

My advice stands. ALS is a low-probability scenario, so the other issues I suggested you look at have a lot higher chance of improving the way you feel than watching the calendar. With problems on the same side, your mattress/overlay/pillow and sleep setup could be another area to look into. For example, if you feel cold from a fan/pain on one side, you may sleep in a way that protects it more, etc.

As you can imagine, people with ALS are not typically increasing their repetition counts, nor doing 5 sets a day of exercises that require gross and fine motor strength. If these are exercises that you enjoy and that help you feel fit, that's great, but as a self-testing regimen, they are unlikely to influence the diagnostic process or outcome.

 

[WellHereWeAre]

Understood,

I don’t enjoy exercise as I was never an exercise person haha, I just do it to make sure I’m not losing strength so as of right now I have no other options. The twitching, weakness and coordination is what’s really bothering me how much slower my right side is compared to my left even though I’m right hand dominant.

Thank you for the advice, I will try not to watch the calendar. Just a long wait with the unknown weighing over the head is rough.

 

[WellHereWeAre]

Upon acquiring measuring tape my right foot and calf are notably smaller which is my dominant side, unfortunately I believe this is more than just the sleep.

The calf is a whole inch smaller. Which is pretty significant.

I’m still maintaining my workout, added stretch bands to do some of those and walking on heels and toes. Feels like it is now getting harder though. But the coordination has gone down more in my ring and pinky finger and ring and pinky toe. Calf is still stiff and the toes and big toe are either non responsive or spread during the Babinski test thing. This is all on the right side, my left side still seems pretty unaffected except for some small twitching every now and then.

it’s just all a lot, and with so much gap between these neurology appointments I feel like I’m losing my head and self.

We’re about 8 weeks in from the symptoms starting which was just a small twitching in my finger which went into a stiff calf a couple days later and then into the arm the next day. It’s been a wild 8 weeks and I feel like I’m drowning.

Sorry for the long reply and thread.

 

[lgelb]

So one of my points is, ALS doesn't move from a stiff calf to an arm the next day. We are all asymmetrical, more than you might think. But even if you have clinical calf atrophy, there is most often an injury or other issue behind it, not ALS, and this likelihood is also supported by your actually being able to increase calf raises.

 

[WellHereWeAre]

I’m really sorry for keep coming back to guys I’m just so scared, and it’s such a long wait to get any answers.

 

[lgelb]

Maybe see/text/do video with a counselor for your anxiety while you await your appt, which I think is soon? You can sign up at e-psychiatry.com to get with someone as early as today, if you don't have anyone accessible locally.

 

[WellHereWeAre]

I’d love to, can’t do it at this time.

But it’s growing difficult to get through my days.

33 - 2 kiddos - just alot to take in. All of you are absolute troopers.

Just to recap

SYMPTOM TIMELINE & PROGRESSION (Currently 9 Weeks In)


Initial Onset (Week 1):

• Twitching/shaking began in right hand finger (around mid-week)
• By the weekend, noticed mild stiffness in right calf. Then both the arm and the leg on the right side start to feel dead or like it was difficult to lift or move. Very fatigued.

Progression Over Time:

Right hand:

• Ongoing coordination issues (especially pinky/ring fingers) I can’t sill flex tap my fingers to my thumb going slow but if I speed it up my hand just doesn’t respond well. Unlike my left which I can do them in order fast.
• Grip strength dropped as low as 35 kg, rebounded up to 47 kg at the end of the day with rest or ibuprofen for soreness. Left hand is around 54-56kg.
• Pain in the hand and forearm, especially during gripping
• Still able to game, type, and use hand — but slower less coordinated and pinky stinks out now.
• Possible mild atrophy in right arm (uncertain visually)
• Right calf/leg:
  • Visible atrophy confirmed — right calf now ~14”, left ~14.5–15”
  • Muscle feels tight and stiff, like it’s always flexed
  • Still able jump, balance, and walk mostly normal
• Foot/toes:
  • Right pinky and ring toes shake and splay outward during dorsiflexion
  • Similar but milder signs occasionally seen in left foot
  • No foot drop; can walk on heels and toes
• Left hand (newest):
  • Brief episode of thumb tremor that lasted 2 minutes
  • Now mild, ongoing tremor at the first thumb knuckle during movement.

I can’t sill flex my fingers out and scrunch them in same with the toes.

I feel like it’s just spreading, and all I have the option to do is wait.

Reflexes and Tests So Far:

• Hoffmann: Negative
• ANA blood test: Positive
• MRI (3 of 3): Clean
• EEG: Completed (results not given till appointment )
• EMG: Still pending — not even scheduled yet

Current Functional Status:

Grip: 47 kg (R), 51 kg (L)
Still able to do as of yesterday:

• Push-ups
• Squats
• Jumping
• Toe and heel walking
• Carrying heavy objects (e.g. wife upstairs)
• No falls, no foot drop, no total limb failure yet

My question is, after 8 - 9 weeks would something have failed by now?
Everything was on my right side now it’s moving into my left.

I shouldn’t have used ChatGPT but I did, and they’re saying I’m raising all the major red flags.