Scared about Bulbar ALS

[jjgevf]

I'm new to the form,frist off,I'm 34 yr. old female.Back around the end of October 2010 while out to eat with my family and some friends.I was eating and went to swallow and It was like I forgot how to swallow,I kind of paniced and then when I tried again after gaging the food back up It went on down.It happened once more right after that.It happened just a few times in November and got bad the week of Christmas.It will go weeks and never happen or only happen once during a meal.No problems chewing that I've noticed,I do have twitching from time to time in different parts of the body,but no weakness that I'm aware of.I have had some weird shortness of breath moments that last only maybe and hour and then I'm fine.I did look up problems with swallowing on the internet and of coarse ALS came up,I tend to be a little anixous about my health,so I'm hoping this isn't the onset of Bulbar ALS!Does this sound like the swallowing problems with ALS,would it progress to other parts?Any opinions or advice would be helpfull.Thanks

 

[trfogey]

Your symptoms do not sound like bulbar ALS. The typical first bulbar ALS symptom is slurred speech, not swallowing problems. When swallowing problems due to bulbar ALS do begin, difficulties usually start with uncontrolled swallowing (food and drink going down the wrong pipe), causing choking and coughing episodes, rather than actual failure to swallow. The choking is especially prone to occur with thin liquids and dry crumbly foods such as cookies and crackers.

With ALS, it's not how your body feels, but how your body fails. ALS is a progressive degenerative neuromuscular disease, which means that, over time (and a short time at that), more and more nerves and the muscles that they control will fail -- permanently. It starts in one part of the body -- a hand, a foot, your mouth or tongue -- and spreads through the body from there.

If no muscles are failing, it's not ALS. If the muscle failures aren't spreading -- from the fingers up the arm, from the foot up the leg, or from the tongue to the rest of the mouth and throat -- it's not likely to be ALS. If your problems come and go, it's not ALS.

You've come across some of the widespread misinformation about ALS that can be found on the Internet and that has brought you here. If you are still concerned about the problems you have outlined here or if the problems you outline here become worse, you should bring them to the attention of your primary care physician, rather than attempting to self-diagnose using the Internet. Your primary care physician has the training to direct you to the care you need, far more effectively and efficiently than any Internet research that you can do for yourself.

Good luck to you.

 

[BarryG]

Bulbar ALS doesn't start with choking and being unable to swallow. It starts with a loss of tongue control which makes it difficult to move food around in the mouth to be chewed and to move it to be swallowed. And if your tongue is unable to move food then you are also unable to speak clearly without slurring.

 

[jjgevf]

Thanks for the replys,part of me said I was crazy to think it could be ALS,but the internet is a wealth of info and sometimes to much info.As far as my speech goes,sometimes I do sound different to me,but not to my husband.I know if you look for something you'll start seeing it.I'm sure it would be noticed not just be me and not last for a short period of time.If it continues or gets worse or seems to progress I'll have it looked at.From what I've read it can take months to a yr or more to be diagonised.

 

[wright]

. . . and it only takes a second to get off of internet search engines, which I suggest you do. You are going to a very dark place that you will find very difficult to leave. Your story is not even close to the story of someone with ALS, so give-up these unfounded thoughts and needless worries and be done with this ALS-nonsense.

P.S. Yes, you're right . . . the internet IS full of information . . . incomplete information, bad information and information you simply do not understand.

 

[jjgevf]

I think it a fine line to say someone gets info they don't need.No one wants to have something as horribile as ALS.I had the swallowing problems that didn't stop,then I noticed twitching in my legs and arms,which is still going on.I didn't go looking for ALS,am I nervous about what this is,yes,as would anyone with new and scary things going on in there body.I watched my mother deal with a horrribile diease that she helped lead doctors to,because she was a nurse and had access to medical infomation.I feel we know our body like no other and it's up to us to be proactive about it.ALS is scary and their is alot of misinformation on the intertnet,thats why I came here,to ask people that have seen and felt it.I know the progression and diease is different for everyone.When you read that you have swallowing problems and twitching with ALS and you have those things,it does worry you.Sorry if I offended anyone on here by my concerns and questions.

 

[wright]

You didn't offend anyone (at least not me). The firmness in the responses was meant to make it perfectly clear that your story doesn't in any way point in the direction of ALS. We did if for your own good . . . believe me.

 

[notme]

HI

While ALS isn't likely--ANYONE that has shortness of breath or any type of breathing issues should go to an ER. Blood clots are possible in someone your age--especially if you are on birth control pills.

There are other not-so-serious things as well--but breathing is a huge issue, not to be ignored. Next time it happens, pick up a phone and call 911