BlueSkies21
Member
- Joined
- Dec 4, 2020
- Messages
- 10
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CO
- City
- Denver
Alright I'm back needing more advice. I applied to the Mayo Clinic, and immediately got denied. I called and asked if there was any more information on the reasoning for that decision, or a way to appeal. No to both. Wont give me a reason, wont let me appeal it. Went back to my GP and told him what happened. He couldn't believe I got denied with everything going on. So he wrote a referral to a different Mayo. After a week of waiting, they informed me I was denied again. I am beyond frustrated. My life is being destroyed and no one will even see me.
In the meantime, since last time I posted:
-My weakness has progressed in my entire body. Walking has become more difficult, squats are extremely difficult. My arms can barely stay up, I cant even hold my arm up to turn off a light switch without my arm shaking and quivering like crazy.
-My throat is terrible. It feels like the back of my throat is collapsing and hanging down. It also gets very dry, and I spend most of every day feeling like something foreign is in the back of my nose. The more I talk or the louder I talk, the worse it gets. It gets sore and painful every single day.
-My speech is transitioning from stiff to sloppy. When I speak fast or loud, I start to sound like Daffy Duck, and I cant help it. Not good.
So...does anyone have any advice at this point? I'm continuing to get worse and I cannot find anyone that can help me. I have just a few weeks of leave left before I lose my job (which at this point is the least of my problems), my mobility is being effected, and no doctor seems to care.
Can anyone recommend another clinic or high-profile neurology dept that can actually help me?
In the meantime, since last time I posted:
-My weakness has progressed in my entire body. Walking has become more difficult, squats are extremely difficult. My arms can barely stay up, I cant even hold my arm up to turn off a light switch without my arm shaking and quivering like crazy.
-My throat is terrible. It feels like the back of my throat is collapsing and hanging down. It also gets very dry, and I spend most of every day feeling like something foreign is in the back of my nose. The more I talk or the louder I talk, the worse it gets. It gets sore and painful every single day.
-My speech is transitioning from stiff to sloppy. When I speak fast or loud, I start to sound like Daffy Duck, and I cant help it. Not good.
So...does anyone have any advice at this point? I'm continuing to get worse and I cannot find anyone that can help me. I have just a few weeks of leave left before I lose my job (which at this point is the least of my problems), my mobility is being effected, and no doctor seems to care.
Can anyone recommend another clinic or high-profile neurology dept that can actually help me?