Status
Not open for further replies.

Baxter7159

Active member
Joined
Apr 26, 2011
Messages
33
Reason
CALS
Country
US
State
New York
Hello

Hello all Im new to this forum but not new to this horrid disease my father was diagnosed with ALS 15 years ago, and like you all he is extremely strong and he is a little stubborn lol. But the reason I am writing and I know you all get tired of this but in the past two months I developed lots of twitching but particularly on one side of my neck and tongue;( I haven't had any issues with speech or swallowing but it feels almost like a heartbeat on the one side of my neck and lately I have a feeling of almost like the muscle knotting up, and twitching in my lip. I was hoping maybe someone could ease the anxiety I'm going through thinking it may be bulbar ALS. Sorry to bother you all.
 

Alastor M

Active member
Joined
Mar 4, 2011
Messages
67
Diagnosis
04/2011
Country
US
State
FL
Re: Hello

Most likely you are experiencing something similar to a sympathy syndrome, and it's being fueled by your stress and anxiety. However, I also recommend genetic testing just in case.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
Re: Hello

It's actually quite possible that you do have nerves knotting up. We can also become hyper-aware of our heartbeat and actually 'feel' it pulsing in various areas. As Alaster said--especially if your father has genetic ALS--get checked. 90% of ALS, though, is NOT genetic. Sorry about your father :(
 

Baxter7159

Active member
Joined
Apr 26, 2011
Messages
33
Reason
CALS
Country
US
State
New York
Re: Hello

Thank you so much for your reply it seriously is helping put me at ease. If you could tell me a little more about the genetic test it would be greatly appreciated.
 

Baxter7159

Active member
Joined
Apr 26, 2011
Messages
33
Reason
CALS
Country
US
State
New York
Re: Hello

Thank you so much and that statistic honestly put me at a great amount of ease! I've been having anxiety attacks about this all. And thank you so much.
 

Baxter7159

Active member
Joined
Apr 26, 2011
Messages
33
Reason
CALS
Country
US
State
New York
Sorry to repost but weird things have been taking place over the last 3. Months...I should say first my father was diagnosed with ALS 15 years ago I believe his sister was diagnosed as well not sure though she did pass. I have a few questions and I.ll list what's going on.

1. Is it possible to experience atrophy before any weakness?
2.Also does the limbs get effected at the same time if it is bulbar onset?

For the past 3 months I have been experiencing some twitching but it wasn't really like a normal twitch somewhat like a flutter it started in my right foot and in my right thigh that went on for about a month after the twitching in my thigh stopped my muscle there was very painful and I notice that it looked way smaller than left leg to the point family members noticed. At the same time I noticed my tongue mainly on the left side would twitch/flutter when at rest and I can't feel it. My tongue also feels very almost tired and like I burnt it almost. In the past 3 weeks I developed what feels like a heart beat in my neck and some weird twitching in my jaw and lips I don't have problems swallowing or speaking. But again I am alarmed bc it seems as though my leg is smaller and is in a lot of pain today but no twitching. Please I beg respond and let me know your opinion so I can stop stressing. I also go for a MRI on May 16th I want to request a emg.
 

Baxter7159

Active member
Joined
Apr 26, 2011
Messages
33
Reason
CALS
Country
US
State
New York
I also forgot tomentiin my thigh twitches sometimes throughout the day but nt constantly and when my foot twitches my toes move. I am sorry to interrupt you all I know there is way more thing going on in your lives.

P.s 21 years old
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
Have you seen a doctor about these issues? If so, what did the doctor say? If you haven't yet seen a doctor, why are you waiting?

To answer your questions: .

1. Is it possible to experience atrophy before any weakness?
Depends on what's causing the atrophy. With ALS, the weakness will come first and the atrophy will occur later. Both are caused by the paralysis of muscle fibers caused by the deaths of the motor neurons that control those muscle fibers, with weakness being the instant effect of the paralysis and atrophy occurring gradually over a period of time.

2.Also does the limbs get effected at the same time if it is bulbar onset?
ALS usually (almost always) starts in a single area of the body. It eventually spreads throughout the body, but it doesn't start all over the body.
 

Baxter7159

Active member
Joined
Apr 26, 2011
Messages
33
Reason
CALS
Country
US
State
New York
I haven't seen a doctor yet made an app with a nuero for the 16th of May, and does this sound anything like it could be ALS it's actually painful some days. I went to a gp he told me he wasn't alarmed but he didn't look at any area I complained about. But he did refer me to the nuero, the gp told me he believed it was anxiety due to me being one of te main providers for my father, but it has never bothered me before. Plus I can see some differences, and when I flex my thigh muscle it shakes don't know if that has anything to do with it but its deff new and alarming! Thanks for your reply please tell me what u think
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
Your neuro visit and MRI will tell you a lot. Try not to stress about it. Chances are it's nothing to worry about. I wish you didn't know so much about ALS Sweets. You may be talking yourself right in to those symptoms. The mind sure can mess with your body!
 

Baxter7159

Active member
Joined
Apr 26, 2011
Messages
33
Reason
CALS
Country
US
State
New York
People please respond I'm freaking out and my thigh is in lots of pain I would just like to get an opinion from you all. I understand you have greater things on your plate
 

brentonjb

Active member
Joined
Jan 20, 2011
Messages
45
Country
US
State
FL
People please respond I'm freaking out and my thigh is in lots of pain I would just like to get an opinion from you all. I understand you have greater things on your plate
Please get a hold of yourself. If you're unable to get yourself together before your appointment, then check yourself into the ER and perhaps than can treat your growing anxiety.

Twitching itself is not a symptom of MND. Everyone twitches. Likewise pain, unless we're talking about severe muscle cramps - is not a symptom of MND.

Unless you are having true clinical weakness (i.e. can't move a limb, finger, or tongue), or are actually experiencing (not perceiving) spasticity in some form, then I wouldn't worry about it all.

Especially at your age. Stay off the internet, quit trying to diagnose yourself, and let your doctor make the evaluation as to what's going on.
 

Baxter7159

Active member
Joined
Apr 26, 2011
Messages
33
Reason
CALS
Country
US
State
New York
Ok thank you so much it's just I'm no stranger to this horrible disease my father has had it for 15 years
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

I've Disabled AdBlock
No Thanks