Spasmodic Dysphonia Bulletin Board

Getting a diagnosis
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Posted by: Peace2u ®
06/28/2007, 07:05:24


Hi, I'm new to the board and very eager to learn more about SD.

My ENT doctor 'suspects' SD. First he's sending me to a Voice Specialist. After speaking with her yesterday, I understand that she will merely 'evaluate' my voice and make some recommendations. That doesn't mean I get a concrete diagnosis.

Question 1: Who makes that diagnosis and how many hoops do I have to jump through for that to happen?

Question 2: Is SD accompanied by an ache at the base of your throat? [that's what I experience]

Question 3: Is it typical that voice patterns fluctuate from day to day?

Thanks,
Peace2u




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Re: Getting a diagnosis
Re: Getting a diagnosis -- Peace2u Top of thread Archive
Posted by: stbetty ®
06/28/2007, 08:13:40


my wife started coming down with it last December and only did we get an app with a specialist June 19th. within 10 minutes they had a name for this {AD SD}. first she had the scope down the nose- then 2 days later went in for the strobe light test which she couldnt do very well as she kept gagging. so the first time she seen 2 specialists and the second time 4 specialists. and there was no debate she had the AD SD. so it must be easy to diagnose. right now we are in waiting for them to chart a plan of treatment which is good as I am now doing my homework on all about it and the forums are great as I am getting real life experiences.
Betty dont have any discomfort except for getting a bit tired trying to force air out when she talks too long. when she first came down with it she initially had stroke-like symptoms with pain shooting down left arm and sick to stomach- all of which lasted less than a minute. but since then no pain at all.
definately she has voice fluctions during the day. most mornings I can tell she still has it but is very understandable- but by the end of most days she is impossible to understand. if she gets out of her normal tone and a higher octave she is a lot better but she cant maintain it very long.
wayne



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Re: Getting a diagnosis
Re: Re: Getting a diagnosis -- stbetty Top of thread Archive
Posted by: Peace2u ®
07/01/2007, 08:00:56


What exactly is a 'strobe light test'? It sounds awful.



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Re: Getting a diagnosis
Re: Getting a diagnosis -- Peace2u Top of thread Archive
Posted by: Laurie ®
06/28/2007, 13:00:38


Hi, Peace,

These days, most ENTs who specialize in voice disorders can make the diagnosis w/in a matter of a 10 minute office visit. It shouldn't be a long complicated drawn out process unless they are less familiar with the diagnosis of laryngeal dystonias or one's case of SD is atypical.

When you say voice specialist, do you mean a speech therapist or an actual MD? These days, I'd go to an ENT who specializes in SD and other voice disorders for a good diagnosis and appropriate treatment.

No hoop jumping should be involved, unless perhaps you have an HMO insurance that puts up walls with referrals. Otherwise, you can make your own appointments. There are a lot of excellent ENTs all over the country who treat this so if you let us know where you're from, we can make you aware of the ones in your area.

Some people w/ SD complain that it takes a lot of effort to talk so that could cause a type of soreness or muscle tiredness. When you vocal folds spasm open or closed involuntarily, it can take more effort to talk (especially if you overcompensate) leading to straining.

An SD voice can fluctuate but rarely seems to go away permanently. It wouldn't be like having SD one week and then being 100% symptom free the next. My guess is sometimes people may just be more "ok" with their symptoms at different times even if they are still audible to others.

Good luck and welcome to the NSDA bulletin board,
Laurie




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Re: Getting a diagnosis
Re: Re: Getting a diagnosis -- Laurie Top of thread Archive
Posted by: Peace2u ®
07/01/2007, 08:07:29


My ENT doctor 'speculated' I have SD and is sending me to a Speech Therapist for an evaluation. When I talked with the Speech Therapist last week she talked as though they were going to treat the symptoms and then fire off a report to my ENT doctor.

I specifically asked about getting a concrete diagnosis so that I could pursue treatment. She said that would be very difficult. You might just be on to something about putting up wall with referrals. Time will tell.

I do, in fact, find it very exhausting trying to talk. However, the 'ache' is always there.

Thanks,
Carole




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Re: Getting a diagnosis
Re: Re: Getting a diagnosis -- Peace2u Top of thread Archive
Posted by: ktblue ®
07/01/2007, 16:32:10


Hi Carole,

I think I know what you mean by the ache. I have a kind of sore tightness thats always there that feels like an ache. I've just never thought of it as an ache but its always there.

good luck with everything.
Katie




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Re: Getting a diagnosis
Re: Getting a diagnosis -- Peace2u Top of thread Archive
Posted by: mdubovick ®
06/29/2007, 00:06:04


To learn about SD, go to the National Spasmodic Dysphonia Association (NSDA) web site. It is: www.dysphonia.org
There you will find information about what SD sounds like; Diagnosis; Treatment; and much more. The information has been screened by a committee of doctors who work with SD patients.



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Re: Getting a diagnosis
Re: Re: Getting a diagnosis -- mdubovick Top of thread Archive
Posted by: stbetty ®
06/29/2007, 18:53:22


yeah- just listen to the sound bites and you will hear yourself and also find out if your AD or AB



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Re: Getting a diagnosis
Re: Getting a diagnosis -- Peace2u Top of thread Archive
Posted by: mariaa ®
07/01/2007, 18:32:02


Hi I wanted to reply and say that I too have that lump feeling in the throat.......yes, at times. I also have the tremor in the neck/head very slightly upon wakening.
I have mixed ab/ad spasmodic dysphonia.
A ENT will make the correct diagnosis based on a view of your vocal cords and hearing you speak.
The voice can vary day to day with spasmodic dysphonia. I vary some days very well, some days not too good.
I am going to get a botox shot again in a few weeks. My last shot was a miss or near miss, meaning I had some benefit but not enough.
I prefer botox.
I am new to botox, this will be my third shot.
I want to say I notice a glass of wine with dinner does wonders for the voice.
"cheers"



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