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Unknown issue (posted in ENT group as well)
Hello!
I was diagnosed with spasmodic dysphonia at 16 years old, I am now 25. Over the years I have developed more symptoms that do not align with this diagnosis. I don’t have issues constantly with talking, just a word in a sentence or only certain times. It is completely random.
However, the “spasms” have moved into my breathing and the right side of my face. I have obstruction in my breathing (confirmed), and constant fatigue. My throat and voice sound/feel as if I’m being choked. My neurologist diagnosed me with FND, but I don’t believe these symptoms align with that diagnosis or spasmodic dysphonia.
I don’t know what to do anymore because my throat, head, and chest CT/MRI came back clean.
The tiredness and the choking feeling have made day to day so hard. It’s gotten worse ever since I had a kid, but has slowly been worsening.
ENT can’t see me again until October.
I would love help on this or some sort of way to go forward. I do think there is a neuromuscular cause or something along the lines, but no idea where to start. I have only gone through Corewell health for this issue but may need to start going elsewhere to figure this out.
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Not to confuse an already confusing array of symptoms but maybe you have more than one thing going on?
I'm sorry you're going through this. It sounds exhausting to be dealing with symptoms that have changed over time, especially when your scans have been reassuring but you still don't have an explanation.
While I don't have personal experience with spasmodic dysphonia, I've read that some people with complex voice or breathing symptoms end up seeing more than one specialist before getting a clearer picture. Since you're noticing facial involvement, breathing changes, and increasing fatigue in addition to your voice symptoms, it seems reasonable to bring all of those changes together for your next neurology or ENT appointment rather than discussing them separately.
If October feels too far away, you could ask whether your ENT has a cancellation list or whether your neurologist thinks referral to a movement disorders specialist or a neuromuscular specialist would be appropriate. Those are questions your care team can help answer.
I hope you're able to get some answers soon. Please keep us updated on how things go.
If you have agreeable insurance and finances consider
travel to a university medical center or multi specialty
clinic like Rochester for diagnosis.
The best thing I did to help diagnose my sister’s issues was to plug test results and symptoms into an AI app , then research results presented.
For example- 70-year-old female with dementia, high-blood pressure, limited mobility…then added blood test results and other symptoms (severe headaches, sharp pain on right that radiates across abdomen, etc.) I did this because there are so many symptoms that are associated with a large number of illnesses.
I kept going through AI results, researching more, and refining/adding symptoms). In the end, that’s what helped me identify her latest illness (or come close enough to get GI to dig in and confirm).
I hope this suggestion can help you. It’s scary and disheartening to deal with an illness for so long and still question the diagnosis.
AI supports your doctor’s diagnosis of FND and says clear CT/MRI results are “characteristic of FND because FND affects brain functioning rather than brain structure, routine imaging will not show any tumors, strokes, or physical tissue damage.”
AI Suggestions
Consult a Movement Disorder Neurologist: If your current diagnosis was given by a general neurologist, seeking a sub-specialist in movement disorders can give you a highly definitive answer. They specialize in telling the difference between organic dystonias and FND.
Explore Specialized FND Therapies: FND is highly treatable. Management typically relies on "retraining" the brain's pathways through specialized physical therapy, occupational therapy, and speech therapy tailored for functional neurological symptoms.
FIRST,,, I'm sorry, this must be a lot on you. I was diagnosed back in May with FND and have done a lot of research. The thing is FND can present in MANY different way. The fatigue fits with FND and I've heard of others with the throat issues. Make sure you tell the ENT that you've been diagnosed with this. My GI doctor was the first doctor who said my GI issues might be neurological. FND is when the brain is just not telling the nervous system to work properly. Keep researching. Good LUck