Go to the ENT...?

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Go to the ENT...?

Postby SLL on June 14th, 2004, 5:34 pm

Anyone here involve an ENT in all their twitching/anxiety mess? Seems to make sense in that we all scrutinize our tongues, etc... and since all they do is look at tongues, throats, etc....they would at least be able to let you know if all looked and acted normally.

I decided, since I was so worried about bulbar stuff and since I just had a normal limb emg and know my neuro is likely fed up with me - have seen him 3 times in 3 weeks - went to a great ENT guy here.

Well, I told him my fears, told him I am working with a neuro...but he took a look at my tongue and exclaimed "what a nice normal tongue" (I have been examining it 1000 times a day, not even knwo what I should look for truly). I told him about my "lump in throat" feeling and he looked deep into my throat, had me do some vocal stuff and said "all behaving/looking normal". Looked me in the eye and said "you do not have bulbar palsy issues". Quite firmly - did not want anymore tests at all.

SO, I am guessing that, of course, they are not the key diagnosers of Motor Neuron Diseases, they surely have experience with them since all the MNDs at some point involve throat,tongue, swallowing, etc...

any thoughts????
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Postby dsiple on June 15th, 2004, 11:30 am

I have been seeing an ENT thru this long strange trip, and he has given me the most feedback yet. He said my throat, larynx, vocal cords, etc., were perfect and not sure what the voice issues were a result of, but said no weakness or atrophy anywhere in my throat. He also has personal experience with ALS, as the familial form is in his family, and has lost 3 or 4 family members to familial ALS. He said that I am too strong to be 7 months in to this, 5'11" and 195 lbs. Hope this helps and, I would say that he has certianly helped with the fears and anxieties that go with this mess.

Regards,
Duane
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Postby thetwitchkid on June 15th, 2004, 12:39 pm

Early on, I went to an ENT who specialized in "voice and swallowing" disorders. He looked at my throat and tongue and said everything is normal. He "nicely" indicated that my throat symptoms were stress/ anxiety related. That was a year ago. He was right. He indicated that he regularly sees patients who exhibit the same type of concerns and that it was not uncommon for patients with stress to present these types of symptoms. Once the anxiety was better, so was my throat.
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thanks

Postby SLL on June 15th, 2004, 2:40 pm

Thanks guys - and Duane - so glad to hear about your excellent neuro feedback last week!!!!!!!

this is what I thought and my ENT was such a good experience..I told him about my fears, he listened and understood and it occurred to me that these guys MUST be very up on ALS cause I'll bet most people who present bulbar go to an ENT first, and then they see or hear something that makes them refer to a neuro.

he said all was so normal in my throat and vocal cords and tongue...i am sure they could spot atrophy and dysfunction in a second. he did not want any tests ordered (barium swallow, etc..) and just looked right at me and said "do not read up on all the details. You do not have anything like that". It was good to hear. said the throat is the most common place anxiety sets in - it just closes up.
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another question

Postby SLL on June 15th, 2004, 6:17 pm

One other question - I am ssuming you guys have face and neck twitches? I have had all over twitches for 5 years but recently the neck and face ones cropped up and it kind of freaked me out. No tongue ones that I can see or tell of.
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Postby puggriffey on June 15th, 2004, 6:55 pm

I have had face, tongue, and neck twitches for months now...also, buzzing/vibrating feeling in my tongue for a while. I too saw an ENT, and have spoken with my neuro., and both have looked, examined, etc. and said all is normal, and rest assured NO bulbar ALS symptoms. Both said flat out that they have worked with a number of patients with this and other conditions, and both were extremely confident and direct that they don't see what they would definitely see. What was truly comforting is what I seem to hear time and time again from numerous posts on this site - both stated emphatically that there is not nearly the amount of "guesswork" or "mystery" to diagnosing ALS and similar diseases as I seemed to be worried there was - they are very much assured that they know what they're looking for, and I don't have it.

More and more, it's confidence in their knowledge that we sometimes lack, and it's confidence in their exertise that I'm learning not to doubt anymore. The earlier post is right, when the anxiety passed, my "bulbar" symptoms passed...basically, my body healed and my throat returned to normal...just like the docs said it would. Pretty *beep* comforting to know despite all the horror stories on the net, more often than not trusting your docs is the right way to go.

Happy to hear all the good news for everyone.

JG
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