I am new to the board and look forward to getting to know you all. I have spent a year researching my voice problem on the internet, and I sincerely believe I have adductor SD and have had this for years. It started when I was in my late teens/early 20s and seemed to abruptly stop when I was about 27. I am 39 now, and my symptoms started returning about a year ago. I have spoken with my GP about my symptoms, and he attributed it to allergies. I think not, especially for the lengths of time I have be experiencing this.

As I am sure all of you can attest, my quality of life is greatly diminished, and I even dread it when my telephone rings at work because my name has a lot of vowels in it, and I can't seem to get it out; it sounds like someone is strangling me. Several times a week, callers will ask me if I'm all right, and it's incredibly embarrassing. I guess my question is, how do I go about getting a doctor or specialist to take me seriously? My health insurance requires that my GP refer me to a specialist if he deems it necessary, but he doesn't see a problem.

Any insight or help would be eternally appreciated. Thanks for your time.

Good luck, and let us know how you do.

First, a big welcome to the NSDA Bulletin Board and I commend you for doing such extensive research on your own. Fortunately, patients are able to do that these days, whereas the Internet was not available in the past for patients who have had SD for many years.

Second, it would really help to know where you are. It seems you are having a difficult time representing yourself (without an advocate) with your GP, who is associated with your insurance company. Having been through four different insurance (HMO) snafus in 13 years, I completely understand what you are talking about. Many of us on this BB do. I'm going through the latest "mess" now, and it's a big one.

You need to unlock the stranglehold your GP has on you. They have the keys to the HMO-kingdom (been there and done it). There are ways to do this.

If there is an NSDA rep in your area who could help explain SD to your GP or represent you (as an advocate) with your HMO so that you could move on, either to a different GP who is aware of SD or to the next level (generic ENT), that might help get you out of the quicksand. If there is a support group in your area, it might help to attend a meeting (even if you have not been officially diagnosed) as people in SD support groups often have contacts and excellent ideas, about doctors and insurance plans, etc. Also, please feel free to order some NSDA brochures to give to your doctor or HMO office. "Educating our doctors" is a common theme for SD patients. More common than not.

The first step is to find out where you are and to get you in contact with other SD'ers in your area. After you make some patient contacts, which might help with local resources, then there are processes where you can get referred out of your network, if needed.

You came to the right place. Many of us have been through exactly what you described. I did my own research in the early 90's (before the Internet) and my doctors/speech therapists all told me I was wrong when I told them I had Spasmodic Dysphonia 9 years ago. Guess who was actually wrong? Not me. Took me two years to change my insurance and get treatment. What a waste of time.

Best wishes and you'll get alot of support and ideas here.

I am located in southern Delaware, and there does not seem to be an NSDA rep in my area...or even Delaware, for that matter. However, I am about 2 hours away from Philadelphia and travel there often. Thus, I have contacted specialists there and would imagine that there are NSDA reps there as well.

I am determined to defeat this debilitating condition (at least to me), and I appreciate having your support.