Spasmodic Dysphonia Bulletin Board

Misdiagnosis
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Posted by: Mani ®
12/25/2006, 04:04:48
As in many cases, my voice diorder was also misdiagnosed by several ENT and voice disorder specialists for a long time,though I had classic SD.

I have found the following helpful,
1)Good sleep.
2)Physical rest.
3)Meditation
4)Avoid mental stress complete. Mental stress worsens problem dramatically.
5)Ibuprofen works for a few hrs(So I take it before going to work.Do not take it at home as chronic therapy may cause renal impairment).
6) Sedatives do work like Diazepam, Lorazepam and Alprazolam, but I am subjected to random urine drug screen at work, so I have not gone on them .

I have not tried Botox. The issue of breathiness to voice scares me,as I already have that and don't want to make it worse!

I have had Injection laryngoplasty. This did not help. Also tried bilateral medialization Laryngoplasty . This also did not work. Speech therapy did not help either.


Now I have learned to live with the problem, though it affects my job and morale tremendously.

I wish there is a pill that could control this problem !.




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Re: Misdiagnosis
Re: Misdiagnosis -- Mani Top of thread Archive
Posted by: mdubovick ®
12/25/2006, 10:15:50
You might consider getting a Botox shot with an extremely low dose such as 0.5 unit. At this dosage, breathiness was TOTALLY ELIMINATED for me. Problem is, the shot might only last a very short period of time, requiring frequent shots. But if you have good insurance and can afford the co-payments, you might consider this approach. You should discuss this with your ENT or on this board.



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Re: Misdiagnosis
Re: Misdiagnosis -- Mani Top of thread Archive
Posted by: Lynne ®
12/25/2006, 16:17:39
Welcome to the SD bulletin board, Mani.

As you and many, my AD-SD case also demonstrated classic symptoms and nobody could diagnose it until I saw a true SD specialist, even after telling my (garden-variety) ENT and the SLP that I thought I might have Spasmodic Dysphonia. Five years of wasted appointments. Things are much better now, with the Internet.

Based on what you said above about breathiness and the Bilateral Medialization, I assume you have ABductor SD? Definitely makes a difference with Botox.

I'm glad you've found this BB and several tactics which seem to help you somewhat. Sorry to hear that the two procedures and the speech therapy didn't help. Have you tried "vocal" therapy by a specialist in SD? Sometimes that helps a little, especially with AB patients.

Good luck,

Lynne (AD-SD; RLN surgery; PVFM-breathing; Northern California)




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Re: Misdiagnosis
Re: Re: Misdiagnosis -- Lynne Top of thread Archive
Posted by: Johanna ®
12/26/2006, 10:56:54
Mani,
I too went a very long time with 'misdiagnosis'. I was also fed nerve pills because so many thought it was a nervous condition. While I stayed stoned most the time, I found them to not be helpful much. Due to financial constraints, I cannot obtain BoTox injections at the moment. So I will take some of your relaxations advise and put them into my daily activities. One thing I am going to do at the beginning of the year is get on Chantix to stop smoking. While I don't feel the condition is directly related to the smoking, I know that it worsens it. So, everyone wish me luck on this venture!!

johanna




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Re: Misdiagnosis
Re: Misdiagnosis -- Mani Top of thread Archive
Posted by: APColleenJax ®
12/28/2006, 23:54:07
I work telephone customer service and was told by an ENT after a scope exam to eliminate possibility of pollops etc that "some people were meant to run marathons and some people werent. Im glad we found our way to the diagnosis.



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Re: Misdiagnosis
Re: Misdiagnosis -- Mani Top of thread Archive
Posted by: Robb ®
01/03/2007, 14:36:03

To your list of non-botox workarounds, I would add Benadryl. I've found that it works reasonably well for me -- better than Ativan, for me personally, and obviously easier to obtain.

Just thought I'd throw that out there. I save it for bad days, trying not to use it at all if possible. But it's a good fallback.




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Re: Misdiagnosis
Re: Misdiagnosis -- Mani Top of thread Archive
Posted by: Pandora ®
01/10/2007, 14:57:50
If you were seeing ENTs and voice disorder specialists, why do you feel you were misdiagnosed? What did they say to you?

The doctors having me riding an emotional rollercoaster right now that is running the gamut from MTD to signs of MS. (I get an MRI next week.) Assuming that I don't have MS, I'm curious as to what you experienced with your doctors and why you feel they had such a hard time making the correct diagnosis.

Thanks,
Frustrated and worried




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Re: Misdiagnosis
Re: Misdiagnosis -- Mani Top of thread Archive
Posted by: Nancy Fallon ®
01/31/2007, 15:57:23
Take a look at the discussion going on under SD treatment Nancy Fallon. It's not a pill but it's just as easy (there actually is a cough suppressant pill by Robitussant, but you have to take it more than once a day).....SO far this has worked great for me. Good luck! Nancy



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