Old 12-06-2017, 08:42 PM #1 (permalink)
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Default Update on symptoms

Hello,

My thread was closed but I thought Iíd give an update. I️ had my EMG done on all 4 limbs, and which showed no issues (even in the bicep he had previously found an issue in). Neuro believed we could eliminate ALS. However, he couldnít address the problem I️ felt in the back of my throat. What I realized after a while was I was actually experiencing vocal fatigue, causing a weak, hoarse voice after limited talking or vocal use.

So I️ went to the ENT. The ENT asked me questions about my symptoms, and after telling him everything he performed a laryngoscopy. He didnít see anything, said the vocal cords looked normal, and that there was no sign of reflux or lesions. He then said to me in a cautious tone ďgiven your neurological symptoms, I️ fear this problem may be neuromuscular in nature. Thereís nothing I️ can do for you right now but recommend a speech therapist. Weíll have to re-evaluate in a few monthsĒ In other words, without explicitly saying it, he fears it could be ALS. I️ asked him if it could be due to my emotions (as theyíve been running out of this world high with my fears over this), and he said itís possible. But in his report, he wrote he feared it was related to my neuromuscular symptoms.

My world has been shattered. I️ have read every. Single. Account. On this forum and BFS forum related to vocal fatigue and hoarse voice, and those with true vocal fatigue and weakness have always wound up having ALS. I️ donít mean an occasional scratchy throat that clears up. I️ mean the muscles in my neck and throat ache after every small conversation, and leave me genuinely hoarse. The only way to get my voice volume back to working somewhat properly is to rest it; if Iím in a social situation where I canít rest it, Iím left with using much more effort to get sound out, making the aching and fatigue much worse. I️ have submitted a request to John Hopkins for an appointment with their ALS Specialists. Truly, I️ believe this is it.

Thanks all for reading. Will update when I️ have updates.
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Old 12-06-2017, 08:54 PM #2 (permalink)
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Default Re: Update on symptoms

We told you no.
Your EMGs told you no.
Your Neurologist told you no.

But an ENT says "maybe neuromuscular" and you go off the deep end.

Go to Hopkins, just for your peace of mind.

But in the meantime seriously consider, and talk to your doctor about, Health Anxiety. It's not uncommon, but it's nothing we can help with.

Good luck!
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Old 12-07-2017, 10:09 AM #3 (permalink)
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Default Re: Update on symptoms

Greg is right. There is no need for your world to be shattered, why do you come here if you don't want to listen?
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Old 12-07-2017, 10:34 AM #4 (permalink)
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Default Re: Update on symptoms

Thanks to both of you for responding, I appreciate you making the effort.

I guess I'm just having a hard time coping with these symptoms. Taken together, they seem to point toward a progressing issue. This sudden and persistent inability to talk correctly has been frustrating, as there was no precipitating event to bring it on. I just woke up and couldn't talk the same anymore. I know most with bulbar begin with slurred speech, but it is very possible for it to begin with the voice too. The ENT I saw specialized in voice disorders, so his inability to give any other explanation is deeply unsettling. Thanks again for your time.
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Old 12-07-2017, 10:58 AM #5 (permalink)
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Default Re: Update on symptoms

So you're taking the word of someone who specialises in voice disorders, not neuromuscular disorders? Does that not seem a bit strange to you? Your ENT's inability to give another answer is because...he does not have the education or training to do so!

Please move on from this forum and work on your health anxiety elsewhere. We are too busy with doctors appointments, daily care, raising ALS awareness and helping those who may have ALS or do have ALS.

Good luck and goodbye!
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Old 12-07-2017, 01:57 PM #6 (permalink)
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Default Re: Update on symptoms

Not to be rude, but it isn't unreasonable to think that he couldn't provide another explanation simply because there isn't one; not because he is unqualified for such an opinion. I experience cramps, fasiculations everywhere (including the tongue and throat), dysphonia, slight dysarthria (trouble pronouncing "k" sounds in speech), some shortness of breath, in addition to an indescribable decline in my every day performance. These symptoms are constant and are not made better by anything I can control.

I'm sorry this forum comes across so many young people with "symptoms" that aren't really symptoms. I believe it's why I've been continually overlooked for months. I'll be the first to admit that what I'm experiencing isn't typical, but it does share similarities to many stories. I truly sympathize with all of those who are struggling, and who are even willing to take time on this forum to answer people like me, in hopes of providing hope to the worried. Truly, I'm not looking for a diagnosis on this forum. I put it out there so I can hear feedback from those who may have shared my symptoms, because it's lonely and scary to have these problems when you know nobody else that does. Whether I have it or not won't be decided here, but it's amazing the support that the PALS and CALS have for one another, and for the many randoms that come here every day. Regardless of what answer I wind up with, I hope to someday make as large a difference as you all have for the people experiencing ALS. You are all amazing people. Thank you again for your feedback; all is appreciated.
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Old 12-13-2017, 04:53 PM #7 (permalink)
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Default Re: Update on symptoms

When I had a laryngoscopy, the ENT clearly saw that my right vocal cord had paralysis of unknown origin. If you are still worried about some type of motor neuron disease, get them to do an EMG on your neck and tongue. It'll hurt but it should put your fears to rest.
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