Hi Kay,Welcome to the NSDA bulletin board recently. As you'll find, the SD patients who post on this forum are a wealth of information and can help with most of your questions. Also, you can go back into the Archives and search on various topics, and will find additional information to answer some of your questions.
Regarding this specific question, it's not a matter of an ENT (oto) "OR" a neurologist. It's a matter of finding an otolaryngologist whose expertise/background is "voice," first.
A neurologist doesn't usually diagnose SD, as they don't specialize in the larynx. They are usually not the first specialist you would see. An oto would usually refer a patient to a neuro, if your case is confusing. If you are dealing with specialists who know SD, a neuro will often work with an oto and an SLP (Speech Language Pathologist) as a team, to confirm a solid diagnosis of Spasmodic Dysphonia ("laryngeal dystonia").
Often, a neurologist's function is to rule out other neurological conditions.
SD, being a fluctuating condition, can be challenging to diagnose and is sometimes confused with other dysphonias (vocal disorders such as Muscle Tension Dysphonia, etc.) by inexperienced diagnosticians. SD has also been confused with other "speech symptoms" related to chronic conditions which are not dystonia.
At a recent NSDA Symposium, one neurologist spoke of a patient who had been diagnosed with SD but actually had ALS (AKA "Lou Gehrig's Disease"). Thus, what a neurologist can sometimes do is further refine/clarify an SD diagnosis. For pure SD cases (clear and classic symptoms) an otolaryngologist specializing in "voice" can normally diagnose and treat a case - without a neurologist.
From your description, you need a different otolaryngologist. Also, there's not a clear cause for SD (and even "triggers" of individual cases can be confusing) so no doctor would be able to tell you that. It's possible that your doctor knows less than the group of patients who post here. Might be time to move on.
SD and the laryngeal structure are complicated. Best bet would probably be to look for an SD-expert in your area. Check out the NSDA website at the top of this page. Healthcare Referral.
Best wishes in finding a new specialist and better information.
--Lynne (AD-SD; Northern California)
