Has anyone else noticed....

[DBowman]

I am curious if anyone else has experienced these "quirks" along with their diagnosis with PLS...

1. An unexplained change of appetite ( cravings, UNcravings, increased appetite, etc.) upon beginning Rilutek...

2. More "violent" sneezing when you DO sneeze...

3. Jumpiness ( sensitivity to loud noises or someone coming up behind you )...MORE than before...

4. Hand or foot "tremors" esp. when straining to do things or after a fall when your adrenaline is up ...

5. When you get an itch do you "jump" at the sensitivity of it...


6. Is it difficult to control your emotions around the loud, gloriously beautiful music at church for weddings or programs...can you not sing because your too busy crying or trying to control the lump in your throat...

7. Do you walk way more slowly than you have to because you are afraid of falling yet 1 MORE time...

8. When you DO fall is it usually in "slow motion"...

?

 

[patricia1]

Yes I jump if I get a itch yesI walk slower fear of falling Do you have ALS I do sounds the same.Pat

 

[tabney]

my experiences

I was diagnosed 2/27/07 with PLS. My most difficult symptom to deal with is the emotional liability. I have days when my emotions are beyond my control. Crying is inevitable and an all day experience. It is completely involuntary. Hard to deal with as well.

I walk very slow. I have only fallen a couple of times but that was two times too many for me. I am very scared of the next fall so therefore very careful and slow.

 

[patricia1]

I think there is a medication you can take for that I dont have that I have als I dont think you get it as bad as pls. Call your als md he will give you something Pat

 

[DBowman]

Emotional liability medicine

There is a medicine that your neurologist can prescribe. Your pharmacist will combine 2 medicines to make it . One is QUINININE ( a heart medicine...low dose ) and the other is a key ingredient in OTC cough medicine...dextromethorphan. My friend with ALS used it and said it worked for her. I could use it myself!

DBowman

 

[CindyM]

Hello DBowman- I haven't a DX yet but I was glad to see your post about the jumpiness. My "startle" reflex is in high overdrive these days so if the phone rings I jump a mile! glad to know we are not alone...Cindy

 

[janf]

Hello, Yes, All Of The Above Oh! Yes And Sneeze, Grab The Head Cause It May Snap Off. Lol And Careful Not To Bite The Tongue . Als ?these Symptons For Sure

 

[DBowman]

I was beginning to wonder if it was just some quirks I had. I know the emotional lability and hyper reflexes are most common among those with PLS (which is what I have). The appetite changes (which I attribute to the Riluzole) and occasional tremors is what I was wondering about especially! I suddenly craved eggs, wanted vanilla INSTEAD of chocolate IF I even WANTED sweets, wanted milk INSTEAD of yogurt (which I ate almost every day), didn't want coffee (for a while) and drank tea in the morning instead...I'm back to coffee now. I could SLEEP and SLEEP and SLEEP sometimes...my sleep is usually interrupted by bathroom visits every 2 or 3 hours now that I am weaker in my lower half...

 

[CindyM]

Hi DBowmen. I wonder what you mean by tremors? If I get overtired my trunk muscles get weak and I wobble when sitting-like one of those infant toys they used to call "Weebles". Remember them? Cindy

 

[midwestgirl]

Oh, Cindy, I do remember Weebles - " Weebles wobble, but they don't fall down." Hmmmm...

 

[CindyM]

I was hoping I wasn't the only one who remembered those toys! My kids used to love them.

 

[DBowman]

Tremors

Hey, y'all...When I said "tremors" I mean when your hand or foot "jumps" repeatedly like you might see in a Parkenson's sufferer...as if the appendage were a machine gun firing...know what I mean? I don"t have these tremors all the time, though. Only at times when I am STRAINING to do things or perhaps after a fall when my adrenaline kicks in...( by the way, my daughter had a set of Weebles when she was little...I enjoyed watching them tumble down their little ramp that came with the set! )

 

[Raymond B]

With the exception of #5, I could have written the exact same list. Hold on, this is a wierd roller coaster. Raymond B.

 

[edna may]

has any one

With the exception of #5, I could have written the exact same list. Hold on, this is a wierd roller coaster. Raymond B.

I have all those symptoms except 5 & 6/ the sneezes are especially bad, 8 or10 at a time & nose blowing for 5 minutes after. I thought it must be an allergy.? EM

 

[CindyM]

I have a nw one to add to the list. My calf muscles feel like they are detaching from the bone. they aren't, of course, but when I wlak the muscle feels jumpy or something. Hard to describe but it is a sensation I hate! Cindy