Posted by: Marilee ®
07/12/2005, 09:25:42
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Hello, Tamara, and welcome to the board! I'm sure you
will find lots of good, helpful info here, as we all do!I'm not sure what an ORL doctor is. Most of us go to an
ENT - otolaryngologist - for testing & diagnosis, and
if it is SD they usually suggest Botox injections in the
larynx. I have been getting them for almost 5 yrs, and
they are very helpful. I also have paradoxical vocal
cord motion, and laryngeal dystonia ( as well as all the
focal cranial dystonias) so I get Botox in lots of
areas, with my neurologist working with my ENT, for
placement of injections. We all know what you mean by stress making it worse -
that's common. So sometimes, doctors will prescribe
an anti-anxiety drug, such as Klonopin, to help with
that part. Since each body (person) is different, and
each doctor has their own way of doing things, sometimes
it takes a period of time (months) to get maximum
relief. But I highly recommend the Botox route, since
it has helped so much. We all care about each other on this forum, and will be
eagerly watching for your updates or further questions.
By the way, have you checked the NSDA site at top of page
to see if there is a support group near you? I'm sure
there is. There is a list for each state, and support
groups are very helpful.
Best wishes to you!!
Marilee, Indiana
Modified by Marilee at Tue, Jul 12, 2005, 10:37:06
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Posted by: Tamara T. ®
07/12/2005, 11:36:20
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Marilee...thank you for responding. The doctor I am going to is an ENT...ORL is short for otorhinolaryngologist! I will post the results of my visit. I am very hopeful that he can make a diagnosis and prescribe me something that will help me. As my voice is so much better when I am relaxed..I am wondering if the anti-anxiety medication you mentioned might not be just what I need! I'm still a bit gun shy on the Botox injections.
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Posted by: Renee ®
07/12/2005, 11:10:18
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From what you have said, it is very possible that you could have spasmodic dysphonia. But it is possible that you have another voice disorder called MTD. (muscle tension dysphonia). Spasmodic dysphonia is a neurological voice disorder, so it is not too helped by speech therapy, unless you have abductor SD. MTD is more helped by speech therapy as it is a functional voice disorder. See if you can see a voice specialist who can determine the difference between the two disorders. An ENT will put a scope down your throat to see if the vocal cords are spasming. This will determine if it is SD. If you DO have SD, it sounds like you have adductor spasmodic dysphonia. Some of your symptoms about ordering thru fast food restaurants and having trouble talking on the phone are very similar to us with SD. Spasmodic dysphonia can, also, be treated by botox or by medications. The two medications that most people have been using are klonopin and neurontin. I was on neurontin for awhile, but I am now off of it at it has a tendency to make you tired. Good luck with your diagnosis!!! Half of the problem with these kind of voice disorders is getting a proper diagnosis. I know when I was diagnosed back in 1992, I was glad that my voice disorder just had a NAME. I had, also, had voice problems for a long time...
Good luck and welcome to the board...Renee ADSD/ Austin, TEXAS
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Posted by: Tamara T. ®
07/12/2005, 11:57:31
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Hello Renee - I hadn't heard of the Muscle Tension Dystonia before.... maybe I should hope I have it instead of Spasmodic Dysphonia!!??? I work at OU Medical Center and I had a speech therapist tell me that he thought my voice sounded like I could have spasmodic dysphonia and that they could give me botox injections to help. That was about two years ago and it has taken me until now to get up the courage to follow-up on his suggestion. Unfotunately the clinic he worked with is not covered by my insurance which is why I have ended up with an appointment with the ENT doctor. I hadn't thought about having to have a scope put down my throat..... that doesn't sound plesant at all!! I am just hoping for a diagnosis and something that will make my voice better! By the way...my husband says that he thinks there is nothing wrong with my voice...has anyone else had family members who thought they were OK? I sometimes think people are afraid to hurt my feelings by mentioning my voice.
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Posted by: Renee ®
07/12/2005, 23:10:49
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Muslce tension dysphonia and spasmodic dysphonia are oftentimes misdiagnosed for one another. It takes a very skilled physician to determine the difference between the two. The main difference is that spasmodic dysphonia is neurological and muscle tension dysphonia is a functional voice disorder. Speech therapy will usually help MTD, but not SD--unless you have ABductor SD. From what you've said, if you have SD, you probably have ADductor SD. The scope doesn't hurt, and it will give you a definitive diagnosis. People in my family oftentimes told me that my voice sounded "fine". I had mild SD for a long time, and mild SD CAN sound "fine" alot of the time. But I always knew that there was something wrong with my voice. When someone diagnosed me with spasmodic dysphonia it just made so much sense. It explained alot. Good luck with your doctor visit tomorrow. ENTs are starting to get alot more sophisticated about SD. Keep us posted on what you find out...Renee ADSD/ Austin, TEXAS
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Posted by: sbayle ®
07/20/2005, 11:36:04
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Tamara-
Don't be afraid of having a scope put down your throat- it is really quite small and doesn't really hurt. It is uncomfortable but not so painful.My husband also doesn't seem to think that my voice is so bad. I think this is for two reasons:
first, when I am talking with him- it usually isn't as bad as it is with strangers.
Second, he knows me so well that he is accustomed to the way I sound and I think he doesn't notice it so much. None of my family members has any idea of how impactful having a voice disorder is in my life. This is why I find the Bulletin Board so useful. Everyone who reads this board understands what it is like to have SD. It is a great resource.
Sarah Bayle
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Posted by: Linda Mott ®
07/12/2005, 11:38:13
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Hi Tamara,
Welcome to the board. I am very glad that you are seeing a doctor to receive a correct diagnosis. I've had ADSD (Abductor Spasmodic Dysphonia) for 30+ years. My voice is like yours, very trembly, sounds like I have a cold or I'm upset. I wasn't correctly diagnosed until 2004 & now receive Botox injections which help. Stress always makes it worse & I'm on Klonopin for anxiety; anxiety seems to affect many of us with dytonia. I also have cervical dystonia which affects my neck. Botox helps it also. The board can provide you with people that understand what you are going through, and they will support you. We are always here for each other. If you have SD, I recommend that you educate yourself here & join NSDA which will provide you with educational literature & emails. The $35 to join is money well spent because it helps toward research for a cure. I will be waiting to hear how your appointment goes & wish you the best. Remember there is life after SD & live it to the fullest. Support groups are great as Marileee said. Linda
ADSD/1973
CD/1989
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Posted by: Marilee ®
07/12/2005, 13:29:16
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Tamara, don't be afraid of the test. I have had two
different ENTs and they both sprayed a numbing agent
into my nostril, then inserted an endoscope in the
nostril (not into the throat). It does not hurt, nor
do you even feel it much. It has a little camera on
the end which can observe your vocal cords as you try
to speak. They have you say something with a lot of
vowels, such as "I eat an apple every day". By
observing how your vocal cords react to your speaking,
they can hopefully determine what is wrong.Also, if you are leary about Botox because of the
needle used, that is painless as well. In my case
and others, it is worth any discomfort!! Results
can be amazing - although limited, as a good result
lasts for only 2 to 4 months usually, and must be
repeated as you feel the need. It just depends on how badly you feel a need for
help ( like a lot of patients you no doubt observe
with other maladies and disorders.) As you can see by all the replies to your posts, we
are here for you!! Keep posting your concerns or
feelings. Sounds as if you have a jewel of a
hubby. I do as well. That helps a lot!!
Marilee
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Posted by: Mary Bifaro ®
07/12/2005, 16:07:12
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Dear Tamara,Welcome to the NSDA's bulletin board. You have already received alot of good advice and support from other members of our NSDA community. You may want to visit the NSDA's website at www.dysphonia.org if you haven't already done so. There is an SD video which is available for sale. It talks about SD and has various patients speaking about having SD. The NSDA offers brochures for your education. There is also a feature on the website where you can listen to SD voices. Please keep in touch with us about the findings of your ENT. Should you be diagnosed with SD, know that you are not alone. There is help and there is hope for those affected by SD. Sincerely, Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: Paula B. ®
07/13/2005, 00:12:24
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Hi Tamara,Welcome to this bb. I was so happy to find this bb when I was diagnosed with SD last February. Reading helps very much to familiarize yourself. I actually read every page on this bb. :) Insane, but I'm glad I did. Realize you are not alone in your vocal problems, and that we will all try to answer any questions you might have. My husband has not noticed a difference in my voice at all. Even when my botox shot was working! I know he loves me. :) Good Luck to you, Paula (Chicago)
ADSD since February 2005
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Posted by: billeygirl ®
07/14/2005, 17:32:53
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I, too, am new to BB. I live in Cold Canada and have thought that my voice problems might be caused by the cool weather. Alas, I have SD like so many others. I also had my tonsils removed when I was 16 and thought my voice trembling was caused by the operation. I hate it! I have had many botox injections, and therapy, maybe it is getting better , but it takes patience. Hang in there.
Billeygirl
Alberta, Canada
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Posted by: Marilee ®
07/14/2005, 18:21:54
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Hi, there, Billeygirl. Glad to have you with us.
Thanks for your input. Hope this is a good day for
you, and we'll be waiting to hear more from you.Warm wishes. Marilee, Indiana, U.S.
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Posted by: Possi ®
07/22/2005, 02:02:18
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Hello to a fellow Okie. I have "another" appt. tomorrow with a "different" Neuro here in OKC. I have been dealing with a progression of Dystonia for about 5-6 years. Mine started with hemi-facial spasms and progressed through increased spasms in my face to Blepharospasms and the beginning of Botox around my eyes. Been doing Botox for 5 years. My voice has had the Katherine Hepburn sound for a long time and now has the jerky, (stuttery) can't get started thing or stopping in the middle of a sentence. It is getting to where I don't want to talk to people I don't know and then I have had to tell my family to be patient and let it come back and to stop trying to finish my sentences. One sister puts words in my mouth that I would never put there and I have her stopped.This is frustrating to me and I have been frightened not understanding one more thing on top of Lupus, RA, As, and many other things. Please post or email me and let me know what is going on and who you are seeing. I went to Mayo 3 years ago just for another opinion and they didn't have anything excitingly new so I am staying put here. I have had my throat scoped 3 times; one being at Mayo. What a waste those were except to know there was no cancer. I saw 2 drs. yesterday (one being at the eye clinic) and at 8:45 see the 2nd Neuro and then back to the
rheumatologist. You knmow all the Lexus and Jag's, etc. in the North side of the city? Well, I think I bought them. LOL Best wishes to you. Hope to hear from you Welcome.
Possi
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Posted by: Dia ®
07/22/2005, 07:41:35
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Hi Possi! I am in Tx not OK but I just had to tell you I laughed out loud at your last paragraph! It's not funny, but it's funny!! Glad you found the BB as it is a great place to meet people and not feel alone!
Good luck with the next appointments!!
Dia
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Posted by: Possi ®
07/23/2005, 22:12:31
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Hi Dia,Thanks. LOL I think I just bought another one.I saw another Neuro with a diagnosis of an essential tremor that we are not treating now and a definite diagnosis of Spasmodic Dysphonia. I have Dystonia getting Botox very often for BEB. We are treting my Dysphonia as of now with meds and instructions to get to the ER if I need an injection of a relaxant. We will decide if the meds are going to work or I am going to get more Botox. I got 40 one time to get my eyes open. The Neuro Friday said he would bet I have lots of friends who would like to follow me around for the left overs before they get discarded. I told him I don't think there are many leftovers. I don't like this. I choked bad tonight taking an antibiotic pill. But I just didn't want to go to the ER so we got through it. Hope you are ok. I have some very good friends who are Texans. I would like to add another one. Blessings.
Possi
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Posted by: billeygirl ®
07/24/2005, 19:09:15
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It is of no coincidence to me now after reading the bb that common symptoms of ADSD afflect many the same way and with similar symptoms. You have symptoms that are identical to mine. People often ask me if I have a cold and for me the easiest thing (may be a cop out too) is to agree. I do not know why exactly the phone conversations seem to really distort my voice, even when I talk to my mother and hear the recording of the conversation. It has brought tears to my eyes and also to her eyes. Even is small groups with casual conversations, if the attention is focused on me, I tend to shy away because I know I will feel the humiliation when my voice starts to crack. I intend to have another botox even though people told me that they noticed no difference when I had it last. It is my choice and an alternative to the breaky voice that I have now. Please stay in the bb, so I know that I have a twin out there...!
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