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Mahealani

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Aloha from Hawaii:

I'm still new to the forum and to ALS. My onset started in my right hand and fingers and has progressed to my legs - I'm still walking but slow and carefully. Just recently my left wrist is feeling fatigued, I'm not sure if it is "overuse" or the start of progression to my left hand/arm. My Dx was in Nov. 08 and I am trying to get to UCLA for a 2nd opinion and/or more support and information.

My newest symptoms are in my face/cheek - tingles and tightness, sometimes by my eye/cheek and somtimes lower by by lip (just the right side so far). It seems to come and go and sometimes stays a day or two. Haven't had swallowing problems yet, but I do seem to notice a cough, especially at night. A couple of times it felt like there was a lump in my throat on the right side, but not all the time.

Are these symptoms similar to anyone else as it progressed to the bulbar area?

It feels like this is a fast progression, I'm taking Rilutek but it's not making a noticeable difference yet.

Mahalo for everyone's wisdom and support from this Forum.

Mahea
 

Al

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Hi Mahea. I don't have bulbar symptoms so I'll let someone else comment on that but wanted to say that with taking Rilutek, you will not notice a difference. It doesn't work that way. It's kind of like when people take a low dose Aspirin for their heart. It's thinning the blood and probably saving you from a heart attack but you won't feel any different. Some people have said that they noticed a slowing of symptoms right away but that is unusual.

AL.
 

Danijela

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tingling

Hi there,
I have read that one of the side effects of taking Rilutek can be tingling around the mouth but my partner is not experiencing this particular effect. I am sure others will have more knowledge relating to the symptoms you outline.
 

ilgal

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My ALS was bulbar onset with slurred speech as first symptom. I also had off and on tingling in one cheek and around my mouth. Neither of the neurologists I went to early on seemed very concerned about the tingling. It stopped after a few months so I'm not sure it was associated with the ALS but I know I had it. I have never taken Rilutek.
 
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Mahealani

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Thanks for the information, I appreciate your comments and knowledge.

The tingleing may be from the Rilutek, it started around the same time, but there seems to be tightness as well - it does seem like I can feel it when I talk, but no one else is noticing slurred speech yet.

I sometimes feel a litle dizzy or "heavy headed" - I'm wondering if this is a side effect of the Rilutek as well.

Mahea
 

Al

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When taking Rilutek have water ready and swallow it quick as possible. It will numb your mouth.

AL.
 

tmasters

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Al,

I'd never heard that about Rilutek so I of course HAD to try it. :smile: Got a numb mouth here! :sad:

-Tom
 

Al

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Now Tom, do you really think I'd steer you wrong? Another fun trick to do if you take Quinine is burp about 5 or 10 minutes after taking it. You would not believe how bad that tastes on the way back up. lol.

AL.
 

tmasters

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Oh-oh. I happen to have some quinine at home. Will try to resist the temptation...

Are there any frozen lampposts I can taste? (Well not here it's 85 degrees F.)

-Tom
 

BethU

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Very clever working in today's temp in So. Cal, Tom. I was trying to think of how to casually mention it. ... "Yeah, I'm getting a feeding tube. Sure hope it doesn't melt in this heat." :-D
 

Al

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Wise guys. Right now it's 5F here going down to -18F tonight. Cold enuff to freeze the balls off a brass monkey.

AL.
 

Mahealani

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You all have such a great sense of humor and positive attitudes!
 

Al

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No we don't. We're either drunk or high on drugs. LOL.

AL.
 

Mahealani

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Al, since you brought up "drinking" I'm going to ask all of you............ do you ever have a few drinks? The Rilutek precautions tell you not to drink and I worry that if I have more than a glass of wine I might not be able to walk very good (even though I'm slow as a turtle now). With the shock of my Dx and the onset of all these new symptons, I'm just starting to accept it all, eat a little more and trying to be a little positive.

Just curious with the Super Bowl coming up - I'm a STEELER fan!

Mahea
 

tmasters

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Mahea,

Aloha.

Obviously you've seen Rose's picture, and you know how hot she is, so you're trying to get on her good side. We're on to you. :p

And Beth, you're on to me I guess. That was clever, wasn't it?

But seriously, I think ALL medications tell you not to drink with them. Boilerplate disclaimer. I often have a drink with my bedtime pill. Hasn't killed me yet.

-Tom

BTW: Mahea: anytime you need a house-sitter, let me know! :smile:
 
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