- Joined
- Jun 10, 2012
- Messages
- 14
- Reason
- DX MND
- Diagnosis
- 04/2025
- Country
- US
- State
- UT
- City
- West Jordan City
Last year I was diagnosed with moderate FTD, I've been treated Intrathecal Baclofen Therapy because all my limbs reflexes were 4+ right ankle and wrist clonus (spacisity), and dystonia torso.
In January I was diagnosed Central sleep apnea and Cheyne-Stokes breathing. Started treatment ASV. The ASV fixed my apnea, but my Oxygen kept dropping and now they say I'm hypoventilation and Cheyne-Stokes even in awakening state.
My cricopharyngeal is dysfunction and my gag reflex is absent and fasciculations have shown up in my legs, feet and chest. My legs have been graded 3/5 and hand grips 3-4/5.
I'm having problems with swallowing, food just slips back my throat and I have to bring it back up. I'm also swallowing too soon, get tired chewing
Over the years have been misdiagnosed with Huntingtons Disease and SCA. When everything was just UMN they suspected PLS.
Anyway, I have an appointment with VA neuromuscular in April on the 10th, my neurologist concerned about breathing muscles and spacisity breaking through my IBT and the swallowing issues. Waiting for word from VA about an arterial blood gas test.
In January I was diagnosed Central sleep apnea and Cheyne-Stokes breathing. Started treatment ASV. The ASV fixed my apnea, but my Oxygen kept dropping and now they say I'm hypoventilation and Cheyne-Stokes even in awakening state.
My cricopharyngeal is dysfunction and my gag reflex is absent and fasciculations have shown up in my legs, feet and chest. My legs have been graded 3/5 and hand grips 3-4/5.
I'm having problems with swallowing, food just slips back my throat and I have to bring it back up. I'm also swallowing too soon, get tired chewing
Over the years have been misdiagnosed with Huntingtons Disease and SCA. When everything was just UMN they suspected PLS.
Anyway, I have an appointment with VA neuromuscular in April on the 10th, my neurologist concerned about breathing muscles and spacisity breaking through my IBT and the swallowing issues. Waiting for word from VA about an arterial blood gas test.
