Spasmodic Dysphonia Bulletin Board

Diagnosis confirmed
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Posted by: hopewells ® 10/25/2004, 20:06:09

In a strange way, I thought I'd be relieved to have my suspicions confirmed. Afterall, it's a relief to learn that my quivering voice isn't a symptom of anxiety. But today, when the doctor told me that I do, indeed, have spasmotic dysphonia, it felt like a punch in the stomach. I'm still trying to process the news and feeling so strangely numb. I'd like you all to know how powerful this message board is...The only thing that calmed me during my first botox injection today, was thinking of those of you that have gone before me. I'm so grateful to have found you. Warmest regards, Margie Modified by hopewells at Mon, Oct 25, 2004, 22:06:32

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Re: Diagnosis confirmed Re: Diagnosis confirmed -- hopewells Top of thread Archive Posted by: Barb ® 10/25/2004, 22:58:43 Hi Margie, I understand how you feel. I was both relieved and scared when I finally found out what was wrong with my voice. I was happy that I had a reason but to realize that there was no fast and simple cure was a little hard to deal with. Now that I have been reading the message board I am more at ease and starting to get my sense of humor back about the whole thing. The only advice that I can really give to you is to keep reading the message board and ask about anything you do not understand or even wonder about. Everyone really does care and they will help you in anyway they can. Barb | Recommend | Alert Where am I? Original message Top of thread Current page Re: Diagnosis confirmed Re: Diagnosis confirmed -- hopewells Top of thread Archive Posted by: tim haskett ® 10/26/2004, 11:39:26 Mostly I was relieved after my diagnosis (ADSD) but there is the problem with there being no cure for this. I'm glad there are treatments available but it still feels isolating to know that my voice will never be "normal" like other people's voice - I think I'm starting to experience some "voice envy" when I hear most people talk so effortlessly and I'm constantly struggling to speak. Knowing the diagnosis is a big step forward but living with the disability is an entirely differrent matter. Like you I'm thankful for this bulletin board to bounce ideas, feelings, and information - and for all the messages of support and understanding. I wish I had a big button to wear that said: HI, I'VE GOT ADDUCTOR SPASMODIC DYSPHONIA - PLEASE LISTEN CAREFULLY AND BE PATIENT WHILE I SPEAK - anyone tried sign language or just writing notes? Thank god for the internet and email - I just can't use the telephone anymore without sounding like a strangling bear or something. How did the botox go? Tim | Recommend | Alert Where am I? Original message Top of thread Current page Botox experience Re: Re: Diagnosis confirmed -- tim haskett Top of thread Archive Posted by: hopewells ® 10/26/2004, 22:37:32 Going into my first appointment I was intent on receiving botox therapy asap if it turned out that I did, in fact, have SD. My doctor explained that he would be willing to administer the botox immediately, however the only botox that he had available was frozen. He told me that botox injections are normally administered on Fridays and that some surplus from last week was frozen. He explained that freezing botox can theoretically reduce its potency, but that a low initial dose was that standard treatment anyway. I agreed to go ahead with the frozen botox, suspecting that frozen or not, a dose of 0.5mg into each cord wasn't likely to be of much benefit anyway. I figured that I might as well get that first "useless" injection out of the way since I was already sitting in his chair. I had a total of 4 injections, including local anesthesia, because he missed the spot the first time. During the injections I remember wishing that I had a teddy bear or pillow because I needed to squeeze something. I told a friend this and she suggested I squeeze the doctors gonads. | Recommend | Alert Where am I? Original message Top of thread Current page Re: Diagnosis confirmed Re: Diagnosis confirmed -- hopewells Top of thread Archive Posted by: charlyn ® 10/26/2004, 18:30:08 I too was happy when I had a name to call the stuff instead of just retreating and hitting the panic button when having to talk especially to strangers. Now I tell anyone who asks no, I am not sick....I have a nerve disorder called spasmodic dysphonia. The wallet cards that the association has are inexpensive and great in a pinch to explain as most have never heard of this stuff. Remember knowledge is power! You know what it is, and what it is not. So take care , Charlyn | Recommend | Alert Where am I? Original message Top of thread Current page Re: Diagnosis confirmed Re: Re: Diagnosis confirmed -- charlyn Top of thread Archive Posted by: kitty ® 10/26/2004, 20:35:26 How do you get the Wallet Card and what do they cost? | Recommend | Alert Where am I? Original message Top of thread Current page Re: Diagnosis confirmed Re: Re: Diagnosis confirmed -- kitty Top of thread Archive Posted by: Barb ® 10/26/2004, 20:39:09 You can get the wallet card by going on the Dystonia Medical Research Foundation web site. They cost 10 cents each. Barb | Recommend | Alert Where am I? Original message Top of thread Current page