Old 08-18-2016, 09:03 PM #1
Reke165 Reke165 is offline
New Member (Say Hi)
 
Join Date: 2016
City: Chicago
State: IL
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
Reke165 is on a distinguished road
Reke165 Reke165 is offline
New Member (Say Hi)
Join Date: 2016
City: Chicago
State: IL
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
Reke165 is on a distinguished road
Default Minor bells palsy and twitching

Hello, I will try to keep this short. I appreciate any incite. I understand that no one can give a diagnosis, but next steps would be helpful.

My symptoms began around the beginning of 2016. I had some facial twitching particularly in my jaw area that stayed pretty consistent. This was followed by twitching in my arms and legs. I also noticed that when I smiled my left side of my smile was lower than my right.

I was not concerned when everything started happening, but after a month of continuous symptoms I decided to see a doctor and was told to see a neurologist. My neurologist appointment came and I was given all the strength tests and passed them.

I was told that for precautions I should be given an EMG. This was done on my arms and legs. The arms were clean, but the legs came back with some fasciculations. The neurologist said that this is normal and I should relax. He has had me follow up with him on a semi-monthly basis.

When I asked him about the smile, he said it could be a minor case of bells palsy and to not worry about it.

So, for the last 5 months I have been dealing with the twitching in multiple areas and the crooked smile. I am worried that since my EMG was not completely clean and it wasn't tested on the bulbar area that this could be bulbar ALS showing as weakness in my left side of my face. Should I be concerned and ask my neurologist to test the bulbar area?

I ask him about ALS and he said he dosent believe that it is that.

Thank you again for your advice.
Reke165 is offline  
Old 08-18-2016, 11:19 PM #2
GregK's Avatar
GregK GregK is offline
Very Helpful Member
 
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,775
GregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant future
GregK GregK is offline
Very Helpful Member
GregK's Avatar
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,775
GregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant future
Default Re: Minor bells palsy and twitching

Your EMG was clean with respect to ALS.

Fasciculations mean squat as you can read for yourself in the Sticky post titled (hint) READ BEFORE POSTING.
GregK is offline  
Old 08-19-2016, 01:38 AM #3
lgelb's Avatar
♥ lgelb lgelb is offline
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: 7,088
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: 7,088
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: Minor bells palsy and twitching

Reke,

You deserve a diagnosis. Bell's wouldn't account for limb twitching. Were you drawn for Lyme and did they do imaging of your brain?

There are plenty of neuros in Chicagoland. I wouldn't wait around for this guy, personally.

Best,
Laurie
lgelb is offline  
Thanks from
ShiftKicker (08-19-2016)
Old 08-19-2016, 06:59 AM #4
Reke165 Reke165 is offline
New Member (Say Hi)
 
Join Date: 2016
City: Chicago
State: IL
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
Reke165 is on a distinguished road
Reke165 Reke165 is offline
New Member (Say Hi)
Join Date: 2016
City: Chicago
State: IL
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
Reke165 is on a distinguished road
Default Re: Minor bells palsy and twitching

Thank you for the reply. I have had an MRI on my brain when this first occurred to rule out MS. It came back normal. He did an MRI on my lower back which showed some nerve compaction and slight disc degeneration.

The neurologist that I am seeing has neuromuscular experience and has seen/worked with ALS patients in his office.
Reke165 is offline  
Old 08-19-2016, 02:43 PM #5
affected's Avatar
affected affected is offline
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: 11,461
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: 11,461
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: Minor bells palsy and twitching

It's good you are seeing specialists to sort this.

Bulbar onset does not present with facial drooping, but the right specialist will investigate everything. An EMG on limbs would have detected ALS, even bulbar onset so things are very hopeful for you.
affected is offline  
Old 08-20-2016, 02:32 PM #6
Reke165 Reke165 is offline
New Member (Say Hi)
 
Join Date: 2016
City: Chicago
State: IL
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
Reke165 is on a distinguished road
Reke165 Reke165 is offline
New Member (Say Hi)
Join Date: 2016
City: Chicago
State: IL
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
Reke165 is on a distinguished road
Default Re: Minor bells palsy and twitching

Thank you for your reply and time.

My concern is this twitching that has not gone away. It has stayed in both of my calves for 5 months and is now migrating to my thighs, toes, and upper body for the last month. I have also been watching my swallowing more closely and have been needing to clear my throat alot as if mucus is stuck in my throat.

I have a follow up with my neurologist at the end of month and will go from there.
Reke165 is offline  
Old 08-21-2016, 12:50 PM #7
Reke165 Reke165 is offline
New Member (Say Hi)
 
Join Date: 2016
City: Chicago
State: IL
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
Reke165 is on a distinguished road
Reke165 Reke165 is offline
New Member (Say Hi)
Join Date: 2016
City: Chicago
State: IL
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
Reke165 is on a distinguished road
Default Re: Minor bells palsy and twitching

I don't know if I can wait for my appointment at the end of August. The twitching that is my right thigh is persistent along with my right foot at the same time. The thigh twitching is concerning as it is really light and I can't barely feel it, sometimes I can see it and sometime I can't.

I am in fear so I watch every step I take and always move my toes and ankles up and down to make sure I can dorsiflex. I am just waiting for the next thing to happen.
Reke165 is offline  
Old 08-21-2016, 01:54 PM #8
Atsugi's Avatar
♥ Atsugi Atsugi is offline
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: 5,167
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: 5,167
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: Minor bells palsy and twitching

Reke, I /we appreciate that you're suffering, but I can assure you--as have several others--that you're not suffering from ALS. I don't know if that helps you cope or not, but I wish you good fortune and I hope you can find a website that is tailor-made for whatever ails you. Good luck.
Atsugi is offline  
Old 08-21-2016, 05:11 PM #9
Reke165 Reke165 is offline
New Member (Say Hi)
 
Join Date: 2016
City: Chicago
State: IL
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
Reke165 is on a distinguished road
Reke165 Reke165 is offline
New Member (Say Hi)
Join Date: 2016
City: Chicago
State: IL
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
Reke165 is on a distinguished road
Default Re: Minor bells palsy and twitching

Thank you for the replies and the time taken to do so.

I don't know what is going on and the twitching is progressing daily. I haven't failed at anything yet that I can personally tell. I'm just waiting for it to happen. It is not the way I should be living, but I just keep watching new body parts twitching daily and wonder when it's going to fail.

Once again, thank you for your time as I know it can be used to help out many people. I'll keep talking with my doctors to figure everything out.
Reke165 is offline  
Old 08-21-2016, 10:57 PM #10
affected's Avatar
affected affected is offline
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: 11,461
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: 11,461
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: Minor bells palsy and twitching

Twitching means NOTHING mate.
affected is offline  
Old 08-22-2016, 09:08 AM #11
Reke165 Reke165 is offline
New Member (Say Hi)
 
Join Date: 2016
City: Chicago
State: IL
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
Reke165 is on a distinguished road
Reke165 Reke165 is offline
New Member (Say Hi)
Join Date: 2016
City: Chicago
State: IL
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
Reke165 is on a distinguished road
Default Re: Minor bells palsy and twitching

I have one quick follow up as I know that others who come here would like help with.

In regards to twitching muscles, when is a good point to worry? If they continue on and on, wouldnt this eventually affect the reflexes or overall muscle use?

I look at individuals like Steve Gleason or O.J. Brigance who had ongoing muscle twitching, but were still able to use their muscles. It took time for the disease to run its course.

Couldn't this twitching that is occurring lead to this the disease overtime or couldn't it eventually be accompanied by weakness?

Once again, thank you for your time and I appreciate the replies. I have looked at other posts and do not want to burn out my welcome, which I believe I already have as my questions have been answered to the best of your ability.

I plan on only coming back to give updates after this post.
Reke165 is offline  
Old 08-22-2016, 12:17 PM #12
GregK's Avatar
GregK GregK is offline
Very Helpful Member
 
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,775
GregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant future
GregK GregK is offline
Very Helpful Member
GregK's Avatar
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,775
GregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant futureGregK has a brilliant future
Default Re: Minor bells palsy and twitching

Perhaps you missed this:

Quote:
Originally Posted by affected View Post
Twitching means NOTHING mate.
GregK is offline  
Old 08-22-2016, 12:54 PM #13
codyclan codyclan is offline
Member
 
Join Date: 2014
City: Round Hill
State: VA
Country: US
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 367
codyclan is a jewel in the roughcodyclan is a jewel in the roughcodyclan is a jewel in the roughcodyclan is a jewel in the rough
codyclan codyclan is offline
Member
Join Date: 2014
City: Round Hill
State: VA
Country: US
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 367
codyclan is a jewel in the roughcodyclan is a jewel in the roughcodyclan is a jewel in the roughcodyclan is a jewel in the rough
Default Re: Minor bells palsy and twitching

Using their muscles doesn't mean that there wasn't some clinical weakness. Really, you need to be working with your doctor on either things that are actually treatable. Wasting your time pursuing an incurable, untreatable disease is not in your best interests.
codyclan is offline  
Closed Thread

Tags
advice, back, bulbar, bulbar als, diagnosis, emg, fasciculations, helpful, neurologist, symptoms, tests, twitching, weakness, worried, worry


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

Similar Threads
Thread Thread Starter Forum Replies Last Post
A Minor Disaster Strikes swalker General Discussion About ALS/MND 11 08-04-2016 02:35 AM
bulbar palsy richiesl General Discussions About PBP 1 07-07-2015 12:16 PM
ALS Progressive Bulbar Palsy/Primary Lateral Sclerosis/Progressive Pseudobulbar Palsy sanddmtta Do I Have ALS? Is This ALS? 3 10-16-2014 05:14 AM
Wedding bells KC2U2 People With ALS - "PALS" 10 06-11-2011 07:23 PM
Pseudobulbar Palsy vs Bulbar Palsy Raina General Discussions About PBP 7 10-12-2010 03:48 PM
Minor twitches but worsening... JustWonderin Do I Have ALS? Is This ALS? 2 12-14-2009 03:46 AM
What's the difference between Progressive Bulbar Palsy and Pseudo Bulbar Palsy? perplexed General Discussions About PBP 13 02-05-2009 11:01 AM
bulbar palsy Wendi Do I Have ALS? Is This ALS? 7 08-22-2008 10:44 AM
Bulbar Palsy mel General Discussion About ALS/MND 18 03-31-2005 02:27 AM


All times are GMT -5. The time now is 02:50 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