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Lavender Lady

Distinguished member
Joined
Jul 6, 2010
Messages
445
Reason
PALS
Diagnosis
08/2010
Country
US
State
WA
City
Lake Stevens
My question is for people with ALS what are the first symptoms when food starts getting stuck in your throat and coughing when you eat. this has been happening to me frequently for the past couple of months. I do not have any twitching in my tongue only in my left arm and hand and an abnormal EMG which I am having follow up on with a specialist but not until August. Sometimes I feel like I forgot how to eat and swallow when I start coughing on food like tonight when I was out with a friend. Is it something I should be concerned about. Second question, It has been made clear on posts when a EMG is not ALS but when it is, what does it look like? I picked up my EMG report and it shows alot of fibs mostly 2+ some 1+, Inserts 2+ and 1+, PSW's 2+ and 1+, weakness in hand with very active twitching in arm and hand. Motor and sensory NCV normal in same arm. Thanks for your input.

Rox
 
What about thin liquids? This is what my PALS noticed first. You need to slow down when eating, and tuck your chin down when swallowing. HUGS Lori
 
I am most comfortable having milk shakes, fruit smoothies and thick sauces. I had trouble handling some foods very early in my diagnosis of ALS. It was not so much the swallowing, as it was moving the food around in the mouth. My first symptom was tongue mobility. If the food was in the center of my tongue I couldn't move it without actually sticking my finger in my mouth and moving it to my teeth, chewing and swallowing. And - I am talking about very tiny pieces.

Good luck and keep eating!
 
Chris, that is how it usually starts and how it did with me, difficulty in moving the food around to be chewed and swallowed. Eventually it became impossible to swallow too. One word of advice that anyone who is starting to experience swallowing problems is to never mix solids and liquids, you cannot wash food down with liquids and it is very dangerous to try.

The only other thing I can say is, plan for a peg tube if you don't already have one. I was very much against it when it was first mentioned to me 2 1/2 years ago but it is now the only way that I can eat and drink anything as I had to give up my daily smoothie in January. I hate to say it but if you have bulbar ALS you will likely be in the same position as me eventually.
 
SO, The thing here is to get the PEG before you really need it. Things can change really really fast. HUGS Lori
 
Thank you for all your input. as I have said I have not been diagnosed with ALS but am having a lot of weird symptoms and the coughing on food and liquids at times is very strange. Today a new symptom was, I was having blurred vision and did see a Dr. reluctantly and he said he could not find a problem and not to worry unless symptoms get worse. It is just all this strange stuff happening that is starting to add up.

Rox
 
Barry

Thanks for your input. My doctor told me all about the Peg at my last appointment and said the earlier I get it the better. It's there when I need it. I have been resisting it. I guess I will give in eventually. I worry about infection, care of the thing, and yet just another problem but I am starting to come around. I attend an ALS support group and they are saying it is good to have too. And, now you too, Barry. My next appointment is in September. I will bring it up then unless my swallowing gets effected sooner.

My legs are weak but I can walk around the house. Now I am noticing my left hand is getting weaker. I am dropping things. My right hand is good. Not being able to walk and talk was one thing, but now my hands! I can still laugh and am trying to keep positive. Fortunately my family is very supportive.

How long have you been diagnosed? I really appreciate hearing people's stories.

Take care, Chris
 
Chris, I first notice symptoms (slurred speech) in July 2007, diagnosed in Jan 2008, and got my peg tube in February 2009. I am still walking, sort of, and my arms and hands are getting pretty weak.

A PEG tube is not what anyone would wish for in their Christmas stocking but I have had very little difficulty or pain with mine so I would really recommend it. And having it doesn't mean that you cant still eat, it can be just a booster port for supplements to what you can still swallow.

Good luck,
Barry
 
Hi I was wondering if anyone started with trouble eating hard things like nuts? I have been have a lot of difficulty with chopped walnuts. It feel like they are getting stuck in my throat even if I chew forever. I can feel them going down very slowly and it hurts. I take sooo long to finish my meals in general. :?:
 
Yes, from my experience that is the way things go. You will have to give up peanuts and concentrate on softer foods that almost melt in your mouth. Like mashed potatoes and tender chicken that can be cut very small and mixed in.
I LOVED peanuts and it was a sad day when I had to give them up. I pushed it too long and had many choking sessions.
 
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