Not good news

[CB1977]

Hello-

I have been pposting and reading this site since July of 08'. I had some bad news today.

I went to an ENT today. They did a scope to look at my throat and vocal cords. The result were that they see moderate atrophy in my left vocal cord. She said this was unusual for someone my age (31). I came to this site because when typing in my symptoms into the google machine back in July, Bulbar ALS popped up. This is the first tangible evidence that something is going on. The rest has been stuff I can feel but the Dr's couldnt actually see.

So, I guess I dont really know what to think or do at this point. I feel like I am one step closer to a diagnosed that I really dont want because I feel now that it is a real possiblility that some type of MND or bulbar ALS could be the final verdict. They sent this info to my neuro, I am sure he will call me back tomorrow. Good day,

CB1977

 

[awieleba]

Well, I can understand why you feel upset forsure. We know that something is wrong, but when we 'actually' have a doctor tell us that they found something, that is hard too. But, I would not rule out myopothy? I dont know alot about bulbar als either. I am sure someone else will chime in. I just wanted to tell you that I do understand, believe me I do......

ps. was this just a regular ent that did that scope in your nose and down your throat? I had that over the summer and I asked him to look for atrophy. He only saw irritated vocal cords.

peace to you

april

 

[constructionduck]

Similar Symptoms

I have followed your story for quite a while because I too have very similar symptoms and unfortunately am 31M as well...has been a hard road, but I am hoping to get some direction at my neuro appt next week. Were you having speech issues? I didnt remember seeing that as one of your symptoms...If the Cleveland Clinic came back with "No ALS" then I would strongly recommend you grab that conclusion tight and hold it over an ENT.

 

[CB1977]

I havent had any speech issues as in slurring that I or anyone else has noticed at this point. The Cleveland CLinic based their No ALs diagnosed on the fact that the EMG came back clean and no clinical weakness. I am not sure what they would have said if they would have had this information about my vocal cord. My voice has had some hoarsnessover the last 6 months that people have noticed.

 

[awieleba]

CB~

did you have an emg on your tongue? If not, maybe you can schedule on? Even if you have that report from your ENT but your EMG is clean and your reflexes are normal along with no clonus, babinski, hoffmans, jaw jerk.....etc etc...you WONT get a diagnosed of als.
All you can do is hang in there....

 

[CB1977]

I dont really care to get a diagnosed of ALS. If I have it, I dont want to know right now. I would rather just pretend that all is well. I have a wife that is expecting, I want to enjoy this experience and not have it clouded by a diagnosed of something that I cant do anything about anyway. After I talk to my neuro tomorrow, I will probably be done with the doctors for at least the next 6 months unless my symptoms get dramatically worse and cant be ignored.

 

[lovelily]

Hi CB...May I ask what symptom sent you to the 'ENT"? Sorry she found trouble. My voice quivers with speaking. ENT found 'quivers' at rest, on my vocal cords. He didn't say anything about atrophy. He also referred me back to my neuro.

I have 'myopathy' (biopsy) and 'denervation' (biopsy). I am not sure which one can cause this trouble. One or the other, both, or neither.

Wishing you the best, as you search for an answer.

 

[awieleba]

CB~

I think that is a good idea. I didnt mean that you wanted a diagnosed! Believe me, I am in the same boat. I like NOT having a diagnosed even though some things get worse. Congrats on expecting, it is wonderful. I went 7 months not going to any doctor because I was so sick of it all, not even to have tests run for some elevated immune issue. IT has been 7 months and 9 months since last EMG and I am finally going back to my neuro on the 26th for repeat emg and clinical. I am not going to CC.

This is going to be the best thing having baby, I would have more if I could! Just wonderful for you and your wife!


did you have the tongue emg?

peace to you

april

 

[CB1977]

Thanks April-

I didnt have a tongue EMG. It is my understanding that it is hard to get a solid reading from the tongue?

- I ended up at the ENT from my pulminologist because he thought my vocal cords were somehow causeing the tightness in breathing that I experience.

 

[planningguy]

CB,

Bummer on the findings for the vocal cords. Perhaps someone with more experience in regards to bulbar onset will chime in, or someone who knows other things that can cause vocal cord atrophy. 31 year old males should not have to deal with these issues (though I did ante up already ).

I'm curious to hear some other perspectives. I am struggling with swallowing and soft palate issues, but always considered myself safe because of the EMG and the fact that I don't have trouble with slurring. Over the last few months it seems like the swallow has gotten a little worse, and I have "morning voice" if I talk for extended periods of time. Still my ENT said that everything looked good. I imagine it will get checked again when I go to the Mayo.

We will be thinking about you.

Take care,

Robert

 

[Zaphoon]

CB,

Let's hope something other than ALS is causing the vocal chord atrophy. I'd ask for some possibilities!

 

[CB1977]

Thanks Robert and Zaphoon. I am hoping and praying it is something else. I also has some vocal cord dysfunction, but she said they were moving fine. I am not sure what any of this means or how it relates to MND type illnesses. All I know is that I have to stay healthy for my unborn child. Its my first child and I want to be there to help him/her grow.

 

[planningguy]

Zaphoon - Wow Gumby went 3D! Very cool...

Robert

 

[Phil M]

CB..I have bulbar als..my first symptoms were slurred speach, and cramps under my chin. Its been a year, and a half, and my vocal cords are still good as far as I know..Doesn't sound like als to me.

 

[Marlene in Arkansas]

First time on this forum

Hi
My husband was diagnosed with ALS on February 9. This is my first time on the forum and just don't know where to start to ask questions. Trying to learn all I can on the web and thought this would be a good place to find additional support.
Thanks.