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Cmelot

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Sep 8, 2013
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Learn about ALS
Country
US
State
Arizona
City
Phoenix
I know there are many people on this forum suffering from this awful disease and I don't want to waste anyone's time, but I feel my fears are valid. I am just looking for a little feedback.
To start, I am an otherwise healthy 26 year old female and I understand my chances of having ALS are very low. My symptoms started about 5 months ago with a sudden onset of difficulty swallowing. I do fine with liquids, but when I eat an solids I cannot initiate the swallow without taking a drink. I've seen a GI doctor and had a normal EGD. I saw a neurologist for an unrelated issue and brought up my swallowing difficulties, but he seemed unconcerned because I had a clear MRI. I feel like I have some difficulty speaking but nobody else has seemed to notice. My neurologist suggested I see an ENT and have an appointment set up for next month.
The last couple weeks I have developed constant muscle twitching, especially in my legs. I don't have any clinical weakness, but my right leg and arm are very stiff and have even been limping at times.
My swallowing did not seem to be getting worse but I blew my nose after eating tonight and food came out. I am not generally an anxious or paranoid person, but I am very scared. I am just wondering if I should be going back to my neurologist demanding more testing or just follow up with the ENT as suggested. Should I even be concerned about ALS?
Thank you to anybody who took the time to read this. Any input would be greatly appreciated. God bless.
 
See the ENT.

Typically, PALS initially choke on liquids, not food. The ENT exam will include your voice box and esophagus. Sounds to me like your doctors are giving you good and timely care.

"Demanding" more tests from a neuro? What tests? It's a matter of getting to the appropriate specialist - finding the right guy for the job, and this, is a process of elimination.

In the meanwhile, take small bites, chew well and have a drink handy, just in case. I don't think you need to be worrying about ALS.
 
Swallowing difficulty, leg weakness, and twitching are worrisome of course. But your chances of having ALS are pretty slim at your age. But don't drag this out. Just cut to the chase and insist that your neuro schedule an EMG now. If he won't, find one that will. Believe me, there are plenty of neuros in AZ who will be glad to perform one.

The ENT exams will most likely show that you have no obstructions causing the swallowing problem. And if you have a swallowing study, at most it will probably just confirm that you have a swallowing problem and not explain why.

So that will leave you with needing an EMG as the next step anyway. So just get it done now. And when it comes back normal, you can start to worry less as you have any other necessary testing.
 
Dr. Bluedog,

You are sooooo offside! In the real ( read sane) world, people don't "demand " tests from neurologists. Doing so can and does give the perception to the neuro. that one knows more. So why bother consulting a neuro?

You don't have a crystal ball - why are so sure that the ENT will not resolve Cmelot's issues? Or, are the ENT specialists as stupid as you believe neurologists are?

@Cmelot, Dr Bluedog's post held one truth... There are many neurologists in Arizona...he should know, he's consulted them all yet he insists monkeys can do their jobs!
 
Thank you everybody for the input. I will try to relax and wait for my ENT appointment. I'm sure they will direct me back to neuro if need be. I just find it hard to relax when I am reminded of this problem every time I try to eat. I try to assure myself it will get better, but its getting harder to do as the months pass with no improvement. I am just no the same happy, easy-going person lately. I have two young daughters, and just want them to have their old Mom back.
Thanks again for taking the time to respond. It really means a lot to me.
 
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