Almost positive I have ALS! (dont wanna die yet)

Status
Not open for further replies.

codya13105

Distinguished member
Joined
Aug 14, 2008
Messages
118
Reason
Learn about ALS
Country
US
State
florida
City
keystone heights
Both Arms twitch at the elbow constant for over 2 months...
when I flex these muscles and let go they stay flexed sometimes...

now I have started to notice the tongue fascics, and also when when I stick out my tongue the tip deviates to one side...

have had constant phlegm for almost 2 weeks, whcih leads me to believe i am having trouble swallowing....

I am a newlywed with a 2 year old little girl....I dont know if I can handle this.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I will say this from someone who has had all your symptoms and worse for over 3 years now, still with no DX. You can train your mind to think of something better. You, more than any of us, have a built-in distractor. I'd spend more time with the baby. Toddlers have a great way of helping you look at the world differently. Good Luck, Cindy
 

codya13105

Distinguished member
Joined
Aug 14, 2008
Messages
118
Reason
Learn about ALS
Country
US
State
florida
City
keystone heights
Isnt The Deviated Tip Very Worrisome Though....or Can It Be Normal?
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
There have been a lot of people on here that have tried to help you, but you just don't seem to want to listen. You yourself have said that you have anxiety issues and that you are a hypochondriac. I'm not sure what else we can do to help you.

Didn't you just see a neuro? What did he/she say? My guess is, he/she said you are fine or you would have mentioned it. If you are that concerened, go to another neuro who specializes in MND if your first one didn't.

I'm sorry if this sounds a little harsh, but sometimes people just need a little kick in the ass to get them to change their mindset or get them to take action to get control of their lives.

After you see another neuro and he/she tells you that you are fine, believe them this time. If that doesn't work, then maybe some therapy is in order.

I truly wish you the best and hope that you find peace.
 

codya13105

Distinguished member
Joined
Aug 14, 2008
Messages
118
Reason
Learn about ALS
Country
US
State
florida
City
keystone heights
my neuro appt. got cancelled...i see one this friday
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
Then what you absolutely must do, is tell your neuro the concerns you have about ALS and ask for a very, very, very thorough exam. Schedule an EMG because you will continue to obsess until you get one.

When the neuro tells you that you don't have ALS, please believe him/her. Neuro's go through 4 years of college . . . then, 4 years of medical school . . . then, an additional 3 years of residency and probably more if they do a fellowship (and most do). They know much more than you do when it comes to neurological diseases. Just because you can spell "google" and "ALS" doesn't mean you can diagnose yourself.

So far the only thing you have are twitches, which by themselves, mean nothing. Let your neuro diagnose you and not the internet. In my opinion (and in the opinion of others on here), your symptoms don't sound like ALS. Again, that is only an opinion (albeit it an informed one) and not a diagnosis.

Now please go relax and enjoy your family. I'm sure they miss you.
 

codya13105

Distinguished member
Joined
Aug 14, 2008
Messages
118
Reason
Learn about ALS
Country
US
State
florida
City
keystone heights
they do miss me, but that isnt the only symptom...what about the deviated tongue...what else explains that?
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Cody- can you lift your daughter? Hold her on your lap? toss a soft ball to her? Spread jam on her toast? Then you have a GREAT quality of life, man! There are people here who cannot do any of these things, but they still enjoy their lives and their families.

Get off the internet and go kiss the baby. This is my advice.
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
If ALS was the only thing that caused twitching and a deviated tongue, then ALS would be pretty darn easy to diagnose. There are about a gazillion other things that can explain your symptoms, 99.9% of them treatable or things that don't need treatment at all.

You had twitches, you googled "twitches" and low and behold, you hit ALS. Then your twitches got worse because you started to panic and then you started looking at your entire body with a fine-toothed comb, looking and finding additional "symptoms."

Can I sit here and tell you with certainty you don't have ALS? No I can't . . . but from what you have told us so far, it sure isn't any reason to panic.

Relax and let your neuro tell you what you have or don't have. Don't start threads that say "I'm almost positive I have ALS" and cause others on here to needlessly panic when they have similar symptoms as you.
 

codya13105

Distinguished member
Joined
Aug 14, 2008
Messages
118
Reason
Learn about ALS
Country
US
State
florida
City
keystone heights
your right "wright", and im sorry if I caused others to panic. thanks for your help
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
It is a good idea to frame your thinking and your statements in a more moderate tone. You would never tell everyone, for instance, "I am almost positive I will win a million dollars," because, well, how will you explain it to yourself and your loved ones if that does not come true?

Never promise yourself something will happen over which you have no control. It closes your mind off to other options. JMO, Cindy
 

codya13105

Distinguished member
Joined
Aug 14, 2008
Messages
118
Reason
Learn about ALS
Country
US
State
florida
City
keystone heights
thanks for everyone's replies.....does anyone know anybody that has a deviated tongue....can it be normal?
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
in regards to your tongue thing. I have some 'mild' twiching in my tongue. When I stuck it out, the tip went to the left. I showed my neuro thinking it was just so bad, and she said that that is not what it would do. the whole tongue goes to one side. If you can move it around and stick it out and swallow, I think your are fine. I have let go of the tongue thing as my main concern. I think you should to.

I know how you feel, but my best advice and what I am doing is just going on this site for only a hour a day and spend the rest with my family.

take care

april
 

codya13105

Distinguished member
Joined
Aug 14, 2008
Messages
118
Reason
Learn about ALS
Country
US
State
florida
City
keystone heights
thank you april....that makes me feel alot better
 
Status
Not open for further replies.
Top