Expect details about the program for the Washington symposium in another e-mailout to the SD members of the On-line Support group soon.

My neurologist has been led to believe or it is his interpretation that they will re-evaluate one that is referred there. Of course I understand that one needs to meet the criteria.

If someone out there in the ether can help me or tell me about NIH or this mail out I would sure appreciate it.

Not sure what Ida was referring to, re a *new treatment approach,* but much information has come out recently, re the upcoming NSDA Symposium in Washington, DC (3/8/2003) and the work Dr. Ludlow is doing in researching SD, re patient-studies.

All of this is *progress,* regarding our disorder. Very exciting. Dr. Ludlow is a world-class researcher (specializing in Spasmodic Dysphonia) for the National Institute of Health in Bethesda, MD.

If you have an opportunity to see her as a patient or study-subject, you're very fortunate. I've been on the Internet, checking out the various study proposals, and don't qualify for any of them unfortunately, as I'm a surgically-treated SD case. It's depressing, not qualifying for an important study where I want to be a guinea-pig!

Good luck, Jean. The information has been all over the place throughout the SD-community (online, etc.) so hope you find it and that you can see Dr. Ludlow also. She's top-notch, as far as I can tell.

Hope this info helps in answering your questions.

Regarding Ida's question, I'm wondering if she was referring to the email announcing the NSDA Symposium Washington, DC on March 8, 2003. This announcement was also just posted to the bulletin board. One of the two medical themes is titled:

"II. New Treatment Alternatives for the Spasmodic Dysphonias"

As far as I know there will not be any radically new treatments announced at the symposium. The topics listed under "new treatment alternatives" include surgical options such as Dr. Berke's SLAD surgery.

This next SD symposium in DC that you are helping to coordinate sounds like *the best of the best.* I was glad to see the tentative agenda published today. Good wishes to you and your team in continuing to develop and refine that informative symposium program.

thanks,

--Lynne (AD/SD; Northern California)

I realize that yes I guess I am very fortunate when my neurologist told me he was sending me to asking if I would go to NIH, so possibly Dr. Ludlow would also give her interpretation of whether the migraines wer brain spasms or was it muscle tension dystonia that was cause the numbness in my hands and sensation loss and as well as neck and back pain. I have had xrays and those areas were not arthritic. But he does feel that my pain is real.

However, Dr. Ludlow's staff is not very well informed, they kept referring to a drug I was on as elavil (it is not) it another antidepressant all together, but it was the drug that first excluded me from the study because she did not want anyone with a history of depression or being treated for depression. Now she will include me because I am taking it for migraine maintenace daily. However, they can't elaborate on what is being done exactly or might be done does, she need anything more than the brief history she got from Dr. Grim, I din get an answer of how long all this takes, but not how often or if that is it for going there. He told me when I talked the scheduler that I would get some papers before the appointment so I would know what to bring and so forth that has been two weeks ago and they have not arrived. It is very difficult for me to manage this year on the phone since my voice has really deteriorated over the last year.

Now with all that said, I am very ambivalent about going, and really don't want to subject myself to a migraine, allergic reaction or something else.. since I have been so poorly managed. I am glad to see that the conference is coming to DC, and I would be interested in attending to hear others speak on the subject first hand.