@Michele34; I can sympathize with you. I went through that with Gelsolin and FKTN LGMD$. Don't know of only one is the cause, but I have several genes that relate to these two and impact the larynx . If you have had your genome sequenced, you or your doctor can go first to OMIM, and check out your symptoms, then check out which genes might be having an effect, then go to Human Phenotype Ontology at HPI.jax.app/browse/gene/xxxx (enter Gene number) to find out the major phenotypes. It will save you much worry, time, and money, and make your doctor a lot smarter.