OK, I've had a barrium swallow, and a CT scan with no results. Good?? yes, but frustrating because I don't know what's wrong with me. I've been prescribed "Nexium" in case I'm having "invisible reflux"??? it didn't help, and now my ENT prescribed me an Albuterol inhaler, hoping to dialate my throat??? I've taken several doses of the inhaler, it's not helping. My voice is getting "raspy" or "throaty", kind of like the typical chain smoker that they make fun of on TV, except I DON'T SMOKE!!! I still have the feeling of tightness, still feel like I can't swallow right, etc.....My ENT doctor quickly dismissed the SD theory. She said if I had SD that I would have a definite change in my voice, not being able to talk...well so what I say!!!! what if I have the beginnings of it and it just hasn't gotten bad enough yet. Whatever I have, SD or not, is driving me insane....does it take having my illness go to extremes before I'll get to the bottom of this? I'm thinking of asking my PCP to refer me to a neurologist and see what they come up with...Man, I feel somewhat better already, mentally that is!!!! No one at home or at work listens to anything I say about my condition. I guess they think I'm nuts. It's nice to talk to someone that knows how I'm feeling...... I'm up for any suggestions you guys have out there??? The stress of this is mounting, I need a reprieve very soon!!!
Thanks..Randa
Re: Tests are Negative, What Next?
Hi Randa,I know exactly how you must feel. I've been there done all that and it is not any fun to go through. My suggestion would be to get a second opinion with another ENT, if you haven't already been to another one. Also I'd think a neurologist might be able to help too. However, it is very important to get one who is familiar with voice disorders and botox. You might also try seeing a gastroenologist to see if you have acid reflux disease or GERD. I wish you the best. Perhaps others on this bb will have a better idea. Regards, Jan Joiner
Re: Tests are Negative, What Next?
Randa - I second all of Jan's suggestions - get a second opinion from another ENT who is a specialist with SD. This is a difficult disorder to diagnose - even for those docs who are experts. The NSDA website lists doctors who deal with this disorder. I wish you well, Robin (AB/So. Calif.)
Re: Tests are Negative, What Next?
Hello Randa,I can relate to the way you are feeling. I went, like you, for a long period of time thinking "What is the matter with me?" I suggest that the best thing you can do is analyse your own problem by searching the internet and deciding yourself what the symtoms are and decide yourself what you think it is. Doctors are good but have limitations. A good friend of mine, who is a Doctor maintains that the best person to work out exactly what is wrong with you is yourself. If you study your own condition with time I am sure you will be able to put your finger on the button. You sound stressed. I know you have every right to, frustration causes stress. I have been there. Try and relax and carefully decide what you have and where you go from here. Hope this helps David
Re: Tests are Negative, What Next?
Why don't you get the name of a speech pathologist in your area who has some experience dealing with SD patients, and make an appointment and have him/her listen to your voice and give you an opinion? The initial diagnosis of SD is made by listening to the nuances of your speech, and I personally feel a speech pathologist is the most likely professional to be able to pinpoint voice disorders since that's what they deal with all day long (although there are plenty of ENTs out there who treat SD enough that they can do this too, but they aren't your "run of the mill" ENTs). If he/she thinks it sounds like SD, you can ask to be referred to an ENT (hopefully who has experience with SD patients) who can make a visual observation with a laryngoscope and then go from there. If she rules it out, you can breathe a big sigh of relief and look for other causes.
You don't sound altogether convinced that your ENT made an accurate call ruling out SD, so if you have a way to ask without offending her, find out if she actually treats at least a couple SD patients.
Good luck,
Susan
Re: Tests are Negative, What Next?
Susan,
The first ENT I saw told me it was just vocal abuse and I wasted months with a speech pathologist.
So I told my GP I wanted to see an Otolaryngologist.
One listen to my voice and the answer was SD.
Don't waste time with general ENTs.
Good luck
Re: Tests are Negative, What Next?
The formal term for an ENT (Ears, Nose, Throat) doctor is Otolaryngologist or Otorhinolaryngologist. Not sure what you mean by "general ENT".
Re: Tests are Negative, What Next?
Randa:
There's this wonderful line from a Margaret Atwood novel that says (please excuse my French), "Don't let the bastards grind you down."
What you need is a new ENT. Someone who knows about SD,which your ENT obviosuly doesn't, or the whole topic wouldn't have been dismissed so readily.
I spent years going from doctor to doctor, each one telling me that it "was all in my head" and then sending me home with a new prescription for tranquilizers or anti-anxiety medication. I really thought I was nuts, and I spent years and years in therapy. While I'm sure it's helped me tremendously (who doesn't need his/her head shrunk a bit, eh?), it didn't do a darned thing for my speech.
I also spent years in speech therapy and the only good it did me was that I went out and got my hair cut like one of the therapist. That was the sum total of almost two years of concentrating on my tongue and relaxing my throat (but damn, if I didn't look real classy in my new 'do).
Just perk yourself up, okay, and make an appointment with another ENT. And remember to stock up on the chocolate; there's nothing like a bag of M&Ms and a trashy movie to make one's troubles float away.
Cheers,
Cinthia-AD/SD-Alaska
Re: Tests are Negative, What Next?
Cinthia,You have really cheered me up this morning. Thank you.
David
Re: Tests are Negative, What Next?
Randa, unfortunately, it sounds as if you are experiencing what so many of us have gone through. I encourage you, as others have on the BB, to seek help in finding another doctor. I noticed you live in Texas. I am not sure if doctor recommendations can be put on the BB, however, maybe someone on the BB could e-mail you as to where you could find a specialiest in your area. Not knowing what is wrong, and going through all those test, can make you physically ill, not to mention what it does to the mind. You sound like you have your hands full, and really need help. God Bless.
Re: Tests are Negative, What Next?
Rando, I started SD with a raspy voice similar to an allergic reaction.
It took me a year and half to be diagnosed. One of the best ENT's in Charlotte told me on several ocassions that there was not anything wrong with me. My vocal cords were perfect. In the meanwhile, my throat became tighter and tighter and my voice continued to become more raspy and less manageable. I tried speech therapy for ten months and my voice improved immediately after practice but would not hold. My speech therapist told me she thought I had SD but the ENT contued to say there was not anything wrong with my vocal cords and I could talk if I wanted to.
Duke Medical Center made the diagnosis. The doctor there deaden one vocal cord and I immediately had a clear voice. He said you have SD and there is no cure and we do not know the cause. I hope you soon can find someone who can help. It is a lonly road to follow. Look for a support group. You will learn more about SD there than any place else. We have a number of people out of state who belong to our support group. With e-mails and newsletters of our activities, we manage to be very supportive of each other.Lib Haywood - SE Regional Coordinator - NSDA AD/SD 34 1987 -
34 injections of BoTox - SLAD surgery 01/01
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