Old 02-13-2018, 09:57 AM #1 (permalink)
SNicole's Avatar
New Member
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
SNicole SNicole is offline
New Member
SNicole's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
Default Genuinely Concerned

Hello!

So my concern started about two months ago when I was 5 minutes in exercise and suddenly my arms became heavy to the point it was hard for me to even pick up my water .(and yes I ate well that day and was hydrated). This has happened before and I had ignored it, but this time I felt like I had absolutely no control over my body which is what scared me the most, i even sat out the rest of the hour, feeling completely frozen. I am healthy and go to this class (Lagree Fitness) at least 5 days a week so theres most definitely not a physical problem. ALS didnt even cross my mind at this point though, I have had previous symptoms of MS so I went to the ER and they did and MRI and no lesions appeared.

Skipping to one month later , my speech is getting so frustrating. I mess up constantly with my “s,ch,th, etc). Ive actually started to purposely slow down my speech when talking to others to make sure I hit all of my consanants correctly. I know numbness typically isnt described in als but my cheeks and upper lip have felt so tight (im assuming this is what botox feels like). This tightness started before my speech issues began. I keep wanting to think that this is all in my head , but every time I try to forget about this issue, it appears again, so now I am truly worried. I believe in ‘mind over matter’ but its not working this time. One question that I do have is , once I mess up a phrase, typically I can think it over and say it again correctly, so should I be worried? I am younger than 30 but the non-stop symptoms do bother me, even with Bulbar being as rare as it is.

And thank you beforehand, I have a neuro appt set up, but I also would like to hear from personal experience if anything Im saying is familiar .

Respectfully,

Shelby

Last edited by SNicole : 02-13-2018 at 10:12 AM
SNicole is offline  
Old 02-13-2018, 10:36 AM #2 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,528
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,528
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Genuinely Concerned

My sister only got worse when she tried to repeat something. I do not have bulbar issues but find the same thing with my problem areas. I will think ( even though I know better) that I just need to try harder. It never works.

Nor does arms feeling heavy hard to pick up water sound familar. I felt/ feel fine but one isolated area stopped working ( ankle) and it spread from there slowly What are your arms currently unable to do?

Good luck with your appointment
Nikki J is offline  
Thanks from
SNicole (02-13-2018)
Old 02-13-2018, 10:43 AM #3 (permalink)
SNicole's Avatar
New Member
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
SNicole SNicole is offline
New Member
SNicole's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
Default Re: Genuinely Concerned

So the arm issue happens randomly. It is perfectly fine in daily activities but it has days where it happens, I never know whens its coming on becaus it happens suddenly. I think at this point it is my speech that is really getting to me.

Thank you so much! If it were ALS would it have gotten progressively worse or is it normal for the issues to start out slow in the beginning?
SNicole is offline  
Old 02-13-2018, 10:55 PM #4 (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: 5,108
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: 5,108
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: Genuinely Concerned

Nope. Nothing there seems remotely ALS-like.

"....issues start out slow in the beginning?" Interesting way to think about it.

ALS is a brain disease where the nerves which control the muscles are destroyed. When ALS attacks a nerve, its muscle doesn't get the 'go' signal, so the muscle doesn't contract as it should. The nerve will never, ever get better over time, so the muscle won't work any better, either. It just gets worse. You can't make the muscle work better by resting it, or by thinking about it. It ain't gonna work, because the nerve in the brain is destroyed.
Atsugi is offline  
Old 02-13-2018, 11:12 PM #5 (permalink)
SNicole's Avatar
New Member
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
SNicole SNicole is offline
New Member
SNicole's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
Default Re: Genuinely Concerned

Thank you bud! It’s just coming down to the wire where I wouldnt know what else it could be , and yes Ive done my research lol The neurologist at the ER said i was a “Zebra” , stating that my symptoms fall into many different categories and this is why she recommended a neuro clinic. (The ER was before my speech issues) I had a concussion three months ago, so I wouldnt really think that it would just now be affecting my speech. Pretty much open to any opinions at this point. Trying not to worry but my speech hasnt improved so its getting hard. Just got back from Disneyworld and I feel like I ruined the trip.
SNicole is offline  
Old 02-14-2018, 03:32 PM #6 (permalink)
SNicole's Avatar
New Member
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
SNicole SNicole is offline
New Member
SNicole's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
Default Re: Genuinely Concerned

If you dont mind me asking, is it possible to start messing up with certain consanants, or would you typically have the ‘drunk slur’ right away? Im very lispy and my cheeks feel like jello so its bothersome. Thank you
SNicole is offline  
Old 02-14-2018, 04:02 PM #7 (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: 6,308
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: 6,308
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: Genuinely Concerned

I would not rule out the possibility that your concussion is still having an effect. That is not uncommon. If you never had brain imaging, you might want to ask about that, and speech therapy as well.

But the others are right -- we don't see ALS in this.

Best,
Laurie
lgelb is offline  
Old 02-14-2018, 04:22 PM #8 (permalink)
SNicole's Avatar
New Member
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
SNicole SNicole is offline
New Member
SNicole's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
Default Re: Genuinely Concerned

Thank you , much appreciated! Yea the last time I had an MRI was prior to the brain trauma so who knows what going on up there lol.
SNicole is offline  
Old 02-14-2018, 04:49 PM #9 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,896
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,896
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Genuinely Concerned

I suggest you go to a neuropsychologist and get tested for traumatic brain injury. They will do all kinds of tests and this will help your doctor determine what is wrong.

Absolutely nothing you posted sounds like ALS. It doesn't come and go. It just keeps getting worse.
KimT is offline  
Old 02-14-2018, 08:49 PM #10 (permalink)
SNicole's Avatar
New Member
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
SNicole SNicole is offline
New Member
SNicole's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
Default Re: Genuinely Concerned

Thanks girly, hopefully whatever this is gets solved soon enough. Driving myself nuts.
SNicole is offline  
Old 02-16-2018, 11:07 PM #11 (permalink)
SNicole's Avatar
New Member
 
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
SNicole SNicole is offline
New Member
SNicole's Avatar
Join Date: 2018
City: Austin
State: Tx
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 12
SNicole is on a distinguished road
Default Re: Genuinely Concerned

Went to the Neuro today. He is ordering and EMG. Theres many more symptoms that I haven't quite mentioned on this forum. I believe the examination went well, he said it doesn't look like anything severe, but did say it looked like a neuromuscular issue. Had a quick question about twitching (I know you get plenty of these . Ive never really cared about twitching until now, its getting very very annoying. My lower thigh/above knee goes off like crazy 10-30 minutes daily and now its worked its way up toward my hip...the spasms feel very powerful at times. Even when I get up to walk they keep going non-stop. The whole side of my thigh twitches and it keeps me from relaxing. Are ALS twitches typically small or are they crazy and last forever like mine?
SNicole is offline  
Old 02-17-2018, 03:39 AM #12 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,964
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,964
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Genuinely Concerned

Typical ALS is about failing not twitching.

I'm thrilled your neurologist says it doesn't look like anything severe.

Please do come back and let us know what the diagnosis is once the testing is done and I wish you all the best in a long and wonderful life
affected is offline  
Old 02-18-2018, 01:31 PM #13 (permalink)
Livealot's Avatar
New Member
 
Join Date: 2017
City: North Richland Hills
State: Texas
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 78
Livealot is on a distinguished road
Livealot Livealot is offline
New Member
Livealot's Avatar
Join Date: 2017
City: North Richland Hills
State: Texas
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 78
Livealot is on a distinguished road
Default Re: Genuinely Concerned

My husband has progressive bulbar palsy. His was noticeable after a really bad cold. His voice sounded like he had laryngitis afterwards. We saw our primary doctor , many times , many tests.She recommended an ENT , more tests, MRIs and lab work. He recommended a specialist in Dallas. He did more test. We were seeing a speech therapist , he said we needed a speech pathologist. We saw 4 nueroglist .This took over 2 years. He never slurred his words ,or mispronounced them.His voice just got worst.He never had a lump in his throat. He hasn't spoken in over a year and now has a feeding tube .BTW he still feels OK.Please don't think you have this disease. Find a good Dr and enjoy life.All the best to you.
E
Livealot is offline  
Closed Thread

Tags
als, botox, exercise, mri, problem, scared, speech, symptoms, worried


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

Similar Threads
Thread Thread Starter Forum Replies Last Post
Concerned about ALS NEDM Do I Have ALS? Is This ALS? 7 11-14-2015 06:59 PM
A little concerned Daknel Do I Have ALS? Is This ALS? 2 11-03-2015 12:35 PM
Should I Be Concerned? Jumpy Do I Have ALS? Is This ALS? 3 11-01-2015 05:21 PM
How concerned should I be that this is ALS? worriedandshaky Do I Have ALS? Is This ALS? 4 07-09-2015 11:21 PM
Is this/should I be...concerned? Willow General Discussion About ALS/MND 7 09-12-2012 04:01 PM


All times are GMT -5. The time now is 12:14 AM.

 

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