ALS Scare #2

[sh18]

Hi guys: for some reason I can't post in my other topic (ALS Scare)...so I created new thread...

Sorry to bother you again with this but I just got so scared :-(

My left tricep twitches less now but I have occasional twitches throught the body no: no weakness though.

Remember how I said I felt like I was salivating more... for few days now..

I googled it and OMG...look what this guy ON THIS FORUM said:

It did seem like there was a time a while ago that I kept biting my tongue and I could never understand why until I read Meg's post.

Another thing was drooling - I noticed I was drooling a lot in bed - which seemed odd - sure enough - increased saliva production is an ALS symptom.

From my limited knowledge - I think it's tough to say what the "typical" symptoms are for ALS - it seems to manifest itself differently in each person.

I have had numbness in my chin - but that has gone away.

this is from: https://www.alsforums.com/forum/newreply.php?do=newreply&p=2667

I don't drool and only have on/off feeling of cramp in my chin (don't have it now), but I do feel like I produce more saliva in last few days.... and right now i feel thirsty too, but no weird feelings in the face or mouth...

((((((((((

 

[Al]

OK you are starting to be a bother. I know you are scared but I had to delete 4 posts that you put in with the same message. If you bothered to read any sticky's or the FAQ you would know that posts with links do not appear until the link is approved by a moderator. You have been told you don't have ALS and yet you come up with another symptom after reading God knows what. You don't get more saliva with ALS, you just don't swallow what you have. Just because rcharlton thought it was a symptom in 2005 doesn't make it gospel. Don't believe everything you read. Not even from here. We can be wrong too.

AL.

 

[sh18]

OK you are starting to be a bother. I know you are scared but I had to delete 4 posts that you put in with the same message. If you bothered to read any sticky's or the FAQ you would know that posts with links do not appear until the link is approved by a moderator. You have been told you don't have ALS and yet you come up with another symptom after reading God knows what. You don't get more saliva with ALS, you just don't swallow what you have. Just because rcharlton thought it was a symptom in 2005 doesn't make it gospel. Don't believe everything you read. Not even from here. We can be wrong too.

AL.

Sorry about repeatedly trying to post: I wasn't sure why it was not posting...

Thank you for encouragement: it is just that I am really a "bother" and my spouse just brushes me off saying I just have another imaginary disease and I have no one to turn to with my symptoms...

 

[planningguy]

Sh18,

I think you can rest easy. Increase in saliva can be caused by a number of different things. Based on my limited knowledge, some common non ALS causes are oral bacteria/infection and acid reflux. Anxiety can also interrupt the swallowing process and cause build up too.

If you haven't already, you need to read Rose's post on "First Symptoms." Sometimes people seem to dig through the forums hunting for PALS (or even undiagnosed people like myself, where ALS is not even suspected) to make some mention of a symptom they have. Doing that is stressful and unproductive. Keep in mind what you said yourself "no weakness."

Since ALS eventually effects almost every part of the body, it can cause a number of secondary symptoms that are shared with numerous other illnesses and situations. I'm sure if you dig hard enough you can find a passing reference to just about any symptom you could think of (Those of you who keep bringing up diarrhea need to stop. You are terrifying people ).

I hope you get to the bottom of what ails you, but please, for your own sanity, stop seeing ALS in everything.

Take care,

Robert

 

[Al]

My sentiments exactly Robert. Well said.

AL.

 

[sh18]

Thank you very much.

 

[sh18]

So I went to regular GP dr. today to assess my reflexes and stuff: she did basic neurological exam and said my reflexes were good.

She said twitches all over the body and weird cramping sensation in the chin does not warrant EMG but if I wanna do it I can...

One question: whenever there are bulbar symptoms does that usually come with some abnormal reflexes in limbs or not? I am just afraid my chin cramping feeling is bulbar symptom and it just not spread to limbs yet...

 

[BethU]

Hi, SH18 ... It's my understanding (and experience) that bulbar symptoms aren't accompanied by symptoms elsewhere in the body. ALS does eventually spread, of course.

Chin cramping does not sound like a bulbar symptom to me.

 

[sh18]

Thank you!

 

[sh18]

One more question: do ALS twitches never stop? Like I have twitches everywhere now :-/ most of the time in my tricep, but now in my left leg, right leg, butt sometimes, even neck and even my nose feels like it twitches a little.

But they come and go: do ALS twitches ALWAYS stay there once they start or can they disappear for a day in the particular spot they appeared?

 

[BethU]

In my experience, they stay in the affected areas. I'm not sure yet how fast they travel to other areas.

I can't feel most of them (I can in my bicep), they're faint, and unless something reminds me to look, I don't think about them. I have to look hard ... and sometimes hold my arm in different positions or light to see them. They're very subtle, not at all like benign fascics.

It is my impression that benign fasciculations are much stronger, more intense and much more intrusive (and annoying) than ALS. If you're feeling strong twitches all over your body, that is not ALS.

Please read the stickies ... they have very valuable information.

 

[sh18]

In my experience, they stay in the affected areas. I'm not sure yet how fast they travel to other areas.

I can't feel most of them (I can in my bicep), they're faint, and unless something reminds me to look, I don't think about them. I have to look hard ... and sometimes hold my arm in different positions or light to see them. They're very subtle, not at all like benign fascics.

It is my impression that benign fasciculations are much stronger, more intense and much more intrusive (and annoying) than ALS. If you're feeling strong twitches all over your body, that is not ALS.

Please read the stickies ... they have very valuable information.

Yes, mine are very noticable and developed all over the body in matter of 2-3 weeks...more so in left arm though...

Thank you: reading everything I can find.

 

[sh18]

I visited neurologist today and he did a basic exam on me. He said all my reflexes, senses, strength, and babinski test are normal and he told me not that this does not warrant EMG test even and that I should not worry.

The other things he said are: the majority of ALS is diagnosed by neurological exam and not by EMG or any other tests. EMG is just to confirm diagnosis. He says he saw half a dozen cases of ALS and he knew they had ALS the moment they walked in the door. He did also say twitches come at the later stages of the disease where there is weakness.. and it doesn't start with twitching and that normally ALS twitches don't come and ago and that if if it is one fiber of your muscle twitching while your muscle is resting than that it is benign. ALS twitches are usually weaker and feel like 'crawling' sensation... and as far as I remember they don't care if your muscle is resting or being used.

He also said "Neurosis" can cause many symptoms and that he himself lived through brain tumors, ALS and many other diseases as medical student. I guess he said those things to calm me down.

I guess just to encourage other twitchers: here is my story.

Started with 'weird cramping sensation' in my chin. My left tricep started twitching non stop for 2 days. Twitches spread all over the body... Had more saliva production. And occasional perception of weakness in left arm sometimes.

Guess what now? My chin feels fine today whole day. For the first time it went with no weird feeling in whole day after a month.. It may come back but I will try to ignore it. And twitching stopped 2 days ago even before meeting with neurologist.

I want to thank everybody for your help and stength (this is something I obviously lack). I made a small $25 donation to the forum to say thanks.

Good luck!

 

[Al]

Thank you and good luck.

AL.

 

[planningguy]

Sh18,

What great news! There is no greater gift than peace of mind.

A happy holiday season to you!

Robert