Old 11-08-2018, 01:42 PM #1 (permalink)
Worriedperson's Avatar
Banned
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Worriedperson Worriedperson is offline
Banned
Worriedperson's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Default Is it ALS?

Iíve read the sticky note that said that this is not a progressive sensory disease. I felt immediate calm when I read that. But then personal experiences of people with ALS seem in line with what I am experiencing.

For about 10 days I have experienced sudden muscle weakness. I am still a 5/5 on strength and have passed all reflex tests. I am experiencing no twitching, no clinical weakness like a dropped foot. It feels like weights are attached to my forearms/hands and legs. I havenít lost coordination though itís not without thought. I feel like I could.

Today, the words als and ms testing were mentioned. I donít seem to fit MS because I have no pain. No tingling, no spasms, no cramping, no double vision. I can run, I can swallow. It just feels like maybe Iíll fall down or like my hands and wrists are weak, though they function. It can feel like Iím over shooting a motion or it is not articulate. Or maybe like Iíll trip. Maybe I donít hold things as steady or I feel like I have to tell myself to walk.

It makes me believe it is not ALS because it is happening in both arms and legs and onset has been about 10 days now, progressively getting worse though I donít lose feeling of function. Theyíre just weighted. But they are still sending me to a neurologist which btw is going to take a month plus. It seems like everyone has had tremors or lost the use of a limb or specific muscle. Could this be als with my symptoms? Or should I expect function loss after the weighted feeling fades or intensifies? Does that happen? I think Iím confused when I hear about progressive weakness from patients but then I really want to hear itís like the sticky note says.... like no weakness, no heavyness? Anyway. Itís giving me anxiety and Iím usually pretty even keel. Would just like to know if anyone else experienced weighted limbs (not just one limb) before either losing function or being diagnosed.

I have a young son and would like to be as prepared as possible with how this is progressing. Thanks you!
Worriedperson is offline  
Old 11-08-2018, 02:10 PM #2 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 7,079
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 7,079
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Is it ALS?

All four limbs feeling heavy within a ten-day period sounds very unlike ALS. What you describe seems more like a systemic disease than a neurological one. I would follow up with your PCP while you are waiting for the neurology appointment and make sure all possibilities have been addressed.

Best,
Laurie
lgelb is offline  
Old 11-08-2018, 02:40 PM #3 (permalink)
Worriedperson's Avatar
Banned
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Worriedperson Worriedperson is offline
Banned
Worriedperson's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Default Re: Is it ALS?

Yes, I agree - or I want to anyway. I would say myesthenia Gravis except looking back it began in my legs not in my face. Thank you for your swift response.
Worriedperson is offline  
Old 11-09-2018, 07:19 PM #4 (permalink)
Worriedperson's Avatar
Banned
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Worriedperson Worriedperson is offline
Banned
Worriedperson's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Default Re: Is it ALS?

Iíd love your input on one more symptom. Weakness of the right hand and heaviness of the right leg. Would you still say it unlikely ALS if I can still grip and carry but it is weaker than my left hand? It feels almost more like my wrist is the issue but my grip is decreased. Would it only be ALS, as you noted, if I suddenly could not hold anything?
Worriedperson is offline  
Old 11-09-2018, 09:20 PM #5 (permalink)
Atsugi's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,173
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator

Atsugi's Avatar
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,173
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
Default Re: Is it ALS?

Maybe this will help:

Joe has ALS but doesn't know it yet. His fingers don't button a shirt anymore, because one or two of the many muscles in his right hand are no longer getting signals from the brain.

Next month, maybe in 6 months, his hand is pretty useless. In the second year, his arm is lost, and the foot is tripping now.

That's what it means to be progressive.

In real life, here's the fastest moving progression I've ever heard of:

In a bookstore, Kristine bent down to look at the lower shelf, and fell over to the floor. One of the muscles in her right foot was not getting its orders from the brain. Being really smart, she went directly to get an EMG, and was diagnosed with ALS.

A month later, she needed a cane. A month after that, a rollator. In the third month, she needed to be carried to her wheelchair, and her hands were beginning to get weak. Throughout the whole time, she never felt weak, never felt heavy or strange or funny or tingling. The muscle just didn't work.

That's the fastest progression I've ever heard of. Note that it's in a serial order, not all over at once.

Now, regarding you. Your super-fast timing must be some other problem, not ALS. And you talked about feeling heavy pretty much all over. But ALS strikes without feeling it, and not all over at once. Also, I get the sense that some days are better than others. But in ALS, once a nerve is shot, it will never come back. So, no, I don't see any reason to think about ALS.
Atsugi is offline  
The Following 2 Users Say Thank You to Atsugi For This Useful Post:
affected (11-10-2018), grounded (11-10-2018)
Old 11-12-2018, 05:47 PM #6 (permalink)
Worriedperson's Avatar
Banned
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Worriedperson Worriedperson is offline
Banned
Worriedperson's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Default Re: Is it ALS?

I have one troubling new symptom.... still no blood work back and neurologist is next week.... I cannot make my right thumb match my left In a thumbs up position. This may have been happening for a while.... but I’ve only just noticed. If I do thumbs up and look at both thumbs one just will not bend back. No pain. It just won’t do it.... I can *feel* tension in my forearm from it and my index finger feels strain. But I don’t feel any resistance in my thumb, it just won’t do it.....
Worriedperson is offline  
Old 11-12-2018, 06:58 PM #7 (permalink)
Worriedperson's Avatar
Banned
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Worriedperson Worriedperson is offline
Banned
Worriedperson's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Default Re: Is it ALS?

I should mention it only happens when my wrist is turned certain ways. But even texting and typing I’m missing letters with the thumb now. It works, it grips, I can press with it and bear weight on it. But I can’t make it go back, only forward.
Worriedperson is offline  
Old 11-13-2018, 11:02 AM #8 (permalink)
Worriedperson's Avatar
Banned
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Worriedperson Worriedperson is offline
Banned
Worriedperson's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Default Re: Is it ALS?

I guess my question is - if it were ALS my thumb would not work at all correct? Like it gets tired as I try and force it back, the muscle below my thumb and forearm and index finger struggle to compensate I think. But because I can use it and grip.... it would not be AlS? Even though I can’t feel that it’s weak? It absolutely has to not work at all?
Worriedperson is offline  
Old 11-13-2018, 11:25 AM #9 (permalink)
KarenNWendyn's Avatar
Moderator

Forum Moderator
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,585
KarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond repute
♥ KarenNWendyn KarenNWendyn is offline
Moderator

Forum Moderator

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,585
KarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond repute
Default Re: Is it ALS?

Any number of things can affect your thumb. For example, tendon issues are far more common than ALS by many orders of magnitude.

Nothing in your post suggests ALS. Read Atsugiís response again. He is a very knowledgeable person.

For your own sanity, please see a doctor and get an exam.
KarenNWendyn is offline  
Old 11-15-2018, 09:59 AM #10 (permalink)
Worriedperson's Avatar
Banned
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Worriedperson Worriedperson is offline
Banned
Worriedperson's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Default Re: Is it ALS?

Just an update: I managed to freak myself out hard enough to speak with a specialist online (neurologist) and I thought I’d share some of what he had to say just to reiterate what all of you wonderful people have told me here.

I have twitching in my legs - no “weakness”. I can run, do push-ups though I fatigue faster etc. Twitching in als would come with weakness. Plain and simple. I’m pretty sure I wouldn’t be able to do any of those things.

Heaviness is not a symptom - and if it comes and goes certainly not. Of MS it could be, but you’d probably be burning all over and have pain.

I’m having an emg soon with any luck anyway but if you want to see if you have weakness try lifting your arms up and down repeatedly until you cannot anymore, wait 5 seconds, and try it again. That’s what als patients feel like all the time in their affected limbs - in the early stages. If you can move all your fingers, toes, limbs and you have twitching it’s probably a bout of anxiety. If you have your strength you’re probably experiencing that or bfs.

Also. If you are a hypochondriac and it’s led you here, or you have health anxiety and these people take time out of their day, donate to the als association or this page. You now have more als awareness than many. Join a walk or donate your time at least!

I’ll update with my emg results and neuro exam when I have them in case anyone wants to know but in all likelihood I’m ok - but so many aren’t and now I can’t stop thinking about that. How can we not have a cure with all of our resources. We can’t even cure diabetes. So heartbreaking.
Worriedperson is offline  
Old 11-17-2018, 08:28 PM #11 (permalink)
Worriedperson's Avatar
Banned
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Worriedperson Worriedperson is offline
Banned
Worriedperson's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: Other
Posts: 8
Worriedperson is on a distinguished road
Default Re: Is it ALS?

Hey guys, I’m preparing for my neuro appt Monday. Basically, I’m gripped with anxiety. The good news - the heaviness is totally gone from my legs. I have fasiculations in my
Calves and thighs, but they come and go and stop when I’m standing and stuff. Seemingly the only two symptoms I have left are my hand, which I can still use well and hold stuff it just feels weaker and my joints feel weird and my thumb feels very tight though I can manage full range of motion it’s just very tight. My hand feels like a claw when I hold my phone or brush my teeth. Again, this is 20 days now.... so there’s very little chance it is als? The fatigue/weakness goes up my forearm but I don’t feel clinical weakness. Just weakening. The thumb doesn’t feel pain.... it’s more like resistance.

The bad news.... my dad is going in for an emg as the neuro suspects als. While this has reignited my anxiety, I now worry for him, living across the country also.

Still going to request an emg but my arm/hand/thumb is now on my mind again 24/7. I feel like my fingers are kinda like gnarly. Like the pinky and ring finger are weakest. Joint pain in the middle finger and stiff but mobile on my thumb up through my forearm. I just so badly want to know what is happening to me.
Worriedperson is offline  
Old 11-17-2018, 09:01 PM #12 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,992
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,992
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Re: Is it ALS?

Please let us know when you receive your emg results before posting further. There is nothing the folks here can do for you till then as you have not been diagnosed with ALS (this is a support group for those diagnosed with ALS and their caregivers, not a health anxiety forum) and you don't seem to gain assurance from the informed and patient answers you have received from the members here already.

Best of luck with your appointment. No more posting till then please.
ShiftKicker is offline  
Closed Thread

Tags
als, als?, anxiety, clinical, confused, cramping, diagnosed, foot, muscle, neurologist, onset, pain, progressive weakness, spasms, swallow, symptoms, symptoms?, testing, tests, trip, twitching, vision, weakness, wrists, young


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off


All times are GMT -5. The time now is 12:09 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016