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cubbies

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Good morning all,

To start, a few things about me: I'm a 33 year old male with 2 previous EMG/NCVs of the arms in 2012 and 2014. These were done as I suddenly had muscle twitching all over the body. My neurologist assured me that it wasn't ALS.

Fast forward to 7 weeks ago (around 3/1/17). I can no longer talk for any length of time without my throat feeling incredibly awkward. Every word, even if it's just a yes or no, isn't right-it's a mid throat feeling of a vocal cord not working right. It feels like a vocal cord isn't working right-it's very hard to describe other than it takes much more effort to talk. Also, people have noticed that I'm talking a little bit quieter than usual. If I have a conversation with someone for a few minutes, my throat has a tired, dull pain to it like it ran a marathon. My tongue also has a somewhat tired feeling (very dull pain-just started about a week ago).

Also, I have a near constant, very small cough because of the feeling of my throat-like I need to clear my throat constantly. I can't breathe clearly without that small cough, and I've never had a cigarette, done any drugs, or had an alcoholic beverage in my life.

I've gone to urgent care twice, where they prescribed me antibiotics and a cough medicine. That didn't do anything.

I went to my family doctor, who prescribed me Zantac (possibly GERD he thought) and to suck on throat lozenges. Neither have done anything.

Both ready care and family doctors examined my ears, throat (say ahh), and nose. Both said absolutely no redness or irritation or lesions. My family doctor listened to my lungs-said they were "perfectly clear."

This leads me to believe something is amiss that nobody can see. I've never had anything close to this before. This is an ultra scary feeling that is causing me to lose sleep and has ruined the quality of my life.

My questions:

1-does this seem like Bulbar ALS?
2-has anyone ever had EMG/NCV done on the arms years prior, have it come back clean, only to be diagnosed years later with Bulbar ALS?
3-What else in the world could cause these symptoms? I'm extremely worried as they are very slowly getting worse. 7 weeks seems like a long time to be experiencing this. The throat issue when talking has gotten most noticeably worse-as I said, there has been a noticeable change in the sound of my voice, there is a constant need to have a very small, unproductive cough, and it's to the point where I don't even want to talk anymore because it feels so uncomfortable and is so difficult and has a dull pain (like a worn out dull feeling) after I'm done having a conversation.

Thank you very much for your help.
 
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Sounds the same as my symptoms. Only a neurologist can determine what the issue is.
 
Now I'm really freaking out-I keep telling myself that since I had a clean EMG/NCV before (twice) that I may be good, but this throat issue is absolutely horrible and has me super scared. I also keep hoping that my age (33) will be in my favor. May I ask how old you are and what your initial symptoms were? Some people say I sound fine, but after just a few minutes of talking, my throat has a dull pain. People obviously can't hear that, but I can feel it. I don't think there is any way I could have an hour long conversation with anyone now. I also had a nasty cold about 2 months ago, so I'm hoping maybe that did something to the vocal cords. Thanks for your help.
 
Dude, you have been hoping to get diagnosed with ALS for what appears 5 + years. You have been told you don't have it several times. Now, step back and ask yourself; Why am I so focused on on being diagnosed with a truly hideous disease? You need help. You won't find it here. I should be as lucky as you are. I AM going to die soon, you won't. DEAL WITH IT.
Vincent
 
Vincent, I'm so sorry to hear you have this horrible disesase. I hope and pray for a medical breakthrough so that you and all PALS no longer have to go through this wretched disease.

What I'm most scared of is after going to 2 completely different doctors neither can find an obvious solution to what's wrong. Also, I'm very scared that another forum member said that my symptoms are exactly like theirs.

I feel like the boy who cried wolf because I've thought I had ALS twice and been wrong. This time though these are actually feelings and sure as heck not imaginary. When I say words like "all" is when I can really feel me struggle. I had about a 15 minute conversation last night and my throat had a bad dull, tired feeling. I don't think I could have carried on another 15 minutes.

Vincent, again, thank you for your advice. It is very much appreciated.

If anyone else had any opinions they would be greatly appreciated. I'm still freaking out because of the response that my symptoms are exactly like what has happened to another person with ALS.

Thank you everyone.
 
Whatever you have, it is not ALS. It's been quite a few years you've been struggling with your symptoms, but it is not ALS. If you had ALS, it would have been detected by now by the doctors you have visited, and the myriad tests you have undergone. While it is not ALS, it may be something else. However that is not something the folks here can help you with. If you had ALS, you would have lost a fair amount of function well before now.

It is very difficult for members here to see people who return over and over and try to get people to agree that their symptoms resemble ALS. You have been at it for years and the people here have failed to convince you it's not ALS- your doctors have failed to reassure you it's not ALS. Please don't ask terminally ill people to spend time reassuring you over and over again. It is not appropriate.

No one here is saying there's nothing wrong- only that it is not ALS. Go see your doctor. Get help with your symptoms with a real live medical professional. Continue pushing to get your symptoms looked at by your doctors.
 
Shiftkicker,

I'm so sorry that you and all people with ALS are going through this. It's a terrible disease that they hopefully will find a cure for very, very soon.

These are brand new symptoms for me, and they're terrifying as the very simple task of speaking is becoming more difficult daily. The fatigue of my throat after 10 minute conversations is difficult to comprehend. I'm sure there are other things that could be causing this, but between that and the non productive little coughs I have several times a day seems to match some of the characteristics of bulbar ALS. When someone else said they had the same symptoms, that really concerns me.

I don't mean to be rude. I'm just looking for a place to share my thoughts and get expert opinions. This seems to be a very welcoming place with TONS of good information.

I plan on calling my neurologist and trying to perhaps find an ear/nose/throat doctor as my symptoms are very slowly getting worse and my panic is off the charts.

Thank you again everyone for all of your help. I realize a 33 year old presenting with throat problems would be incredibly rare, but it just seems all my symptoms fit 🙁
 
Good afternoon all,

Just an update. I saw my neurologist today and he said very small chance of ALS, even though the strain on my voice and the dull pain in my throats and on my tongue is getting worse after talking for even shorter lengths of time.

What worries me the most is after doing the reflex tests on my arms and legs, all he did was tell me to say ahhh for about 5-10 seconds. He never looked at the bottom of my tongue or did any other test on my face or neck.

He referred me to an ent and is going to have me do a swallow study. I'm hoping and praying he just didn't blow me off because I was worried and wrong twice before.

Once again, thank you to everyone here for responding. It means a lot to me. I consider people living with this horrible disease to be amongst the bravest on the world. Your courage is absolutely amazing.
 
Good morning,

Slowly but surely each day, symptoms are getting worse. There is a dull sensation (no pain) in the middle part of my throat when speaking-as if a muscle is dead or not working. On the right side, however, there is what feels like muscle straining and it causes a decent amount of pain, to the point where I can no longer have a conversation of about 10-15 minutes. My tongue also is having more and more dull pain, especially after speaking. I am extremely scared this is the onset of something terrible. Are these symptoms at all consistent with the start of ALS? They just keep getting worse and absolutely nothing I've tried is making them better as they've continued for weeks now. Thank you.
 
No, they aren't. Your doc told you that, we have told you that. Docs don't 'blow people off'. They take their jobs seriously and know what to look for. You say you are seeking reassurance, but you've been given it and you don't stop. My husband died of bulbar ALS. It was not a matter of feeling fatigued after a 10 minute conversation. His first and primary symptoms were slurred speech NOTICED by OTHER people. But you know that. You have done the research and know that is how bulbar usually presents. You are looking for a rare, atypical presentation in an already very rare disease. Go to your doc, but belive us, Dr. Google is not your friend. Time to move on.
Tracy
 
Cubbie-

It might be best if you not post anything till after your next doctor's appointment. While this forum is great for providing information to those who have questions about ALS, there is little we can do to help with health anxiety that prevents people from being able to take in what they are being told. Your statement that your doctor "blew you off" tells me you are not able to disengage from an absolute conviction you have ALS even when an expert tells you no.

Best of luck with your ENT appointment.
 
It took for me almost a year to get diagnosed, mine started on my right leg with cramps and weakness and twitching all over my body. When finally I was send with a neurologist, it took two weeks to get diagnosed, First strength test I failed, then it came the EMG was positive. This test will tell if it is ALS. When for a second opinion came back positive. I also got that cough that you are talking about, and my speech is getting worse. But don't panic a neurologist will Find out. Maybe you have a problem in your throat. AlS is very difficult to detect.
 
Good afternoon,

After visiting the ENT, he put a tube down my nose but couldn't see far enough to the larynx/vocal cords. It's getting more sore more quickly when I talk, and sometimes words fail to come out after awhile now. I read that around 5% of Bulbar ALS cases start with vocal cord paralysis. I'm really hoping that isn't it. I have a swallow study scheduled in a couple of days, as well as a video strobe test of my throat in mid-May. I go back to the neurologist in mid May as well. I'm really hoping what I have isn't that bad, but it has been constant for about 2 months now, with it slowly getting worse. Unfortunately, nobody can find the cause yet, and the pain is definitely there after awhile. Thanks for letting me vent everyone-I really, really appreciate it and I greatly admire all of you brave folks that are battling this awful disease.
 
I just got back from having a swallow study-the speech pathologist said I have "slightly weak throat muscles for a 33 year old male." Now I'm freaking out even more. I don't go back to the neurologist until mid-May, and a few days later I'm having a video stroboscopy. My throat gets really tired after talking-more and more as each day goes by. The tongue gets fatigued too. I'm not sure what other kind of illness this could be. I've had this going on for 2 months now and it's getting slightly worse each day. They said my lips were fine and my lips sealed fine. The speech pathologist suggested I take an extra swallow when I eat and an extra sip and swallow when I drink.

Any help or suggestions on what else could POSSIBLY cause this other than ALS would be greatly appreciated. She literally saw no lumps, bumps, nodules, nothing. Just "slightly weak throat muscles for a 33 year old male."
 
Cubbies
You are asking us to tell you what else it could be but ALS, we are not doctors we can't diagnose you. You obviously have something going on and you need to keep working with your doctors to resolve it.

We know als we live with it, several people on this post have told you that what you are describing doesn't sound like als doesn't tie up with our symptoms and experience. That's the only help we can offer. You are asking for something that is beyond our abilities to provide, because you don't seem to find any of our answers reassuring at all.

I wish you luck and hope you can get some answers from your doctors soon.

Wendy
 
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