Get some sleep girly! You can do these videos but can always wait til your home. Have you had any genetic testing...? I am probably pursuing genetic testing for something called Turners Syndrome. Anyways food for thought.
Aw I am trying. Yesterday pretty much all I did was sleep :). It's been hard with seizures in my sleep, which kind of scares me to sleep, but is obviously important. That is an interesting idea. Right now my doctor's don't see a need for extensive genetic testing because my family has been generally healthy, and they feel comfortable diagnosing me based on symptom presentation/lab results/etc. although that is food for thought as I continue to struggle with symptoms. I have had VERY comprehensive testing, so if there was need for that, I think it likely would have been flagged, but I'll keep that in mind :). Stay strong and wishing you clarity and hope with your own journey and genetic testing!
I always love hearing form other patients and their experiences. The other day someone commented asking if I had hypermobile EDs and I responded "my doctor's haven't mentioned it, so I don't think so!" and then a week later was diagnosed with it kind of incidentally. That just speaks to the power of listening to patients -they saw it before my providers did because they also had it! I have a lot of medical anxiety so I try to "let the doctor's do the doctoring" to help myself from spiraling, which means advocating for myself when something feels wrong, but trying to not too dig too deep in places that they haven't expressed concern which is something I used to struggle a lot with. For example, I have started to not look at my lab results unless they have expressed concern, because otherwise I spiral even if something is only slightly out of range. It's a hard balance between accepting the FND diagnosis and also acknowledging that there might also be other comorbidities, and to make sure things don't just automatically get labeled as FND.
Get some sleep girly! You can do these videos but can always wait til your home. Have you had any genetic testing...? I am probably pursuing genetic testing for something called Turners Syndrome. Anyways food for thought.
Aw I am trying. Yesterday pretty much all I did was sleep :). It's been hard with seizures in my sleep, which kind of scares me to sleep, but is obviously important. That is an interesting idea. Right now my doctor's don't see a need for extensive genetic testing because my family has been generally healthy, and they feel comfortable diagnosing me based on symptom presentation/lab results/etc. although that is food for thought as I continue to struggle with symptoms. I have had VERY comprehensive testing, so if there was need for that, I think it likely would have been flagged, but I'll keep that in mind :). Stay strong and wishing you clarity and hope with your own journey and genetic testing!
I always love hearing form other patients and their experiences. The other day someone commented asking if I had hypermobile EDs and I responded "my doctor's haven't mentioned it, so I don't think so!" and then a week later was diagnosed with it kind of incidentally. That just speaks to the power of listening to patients -they saw it before my providers did because they also had it! I have a lot of medical anxiety so I try to "let the doctor's do the doctoring" to help myself from spiraling, which means advocating for myself when something feels wrong, but trying to not too dig too deep in places that they haven't expressed concern which is something I used to struggle a lot with. For example, I have started to not look at my lab results unless they have expressed concern, because otherwise I spiral even if something is only slightly out of range. It's a hard balance between accepting the FND diagnosis and also acknowledging that there might also be other comorbidities, and to make sure things don't just automatically get labeled as FND.