Foodie1
Member
- Joined
- Sep 17, 2020
- Messages
- 15
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- MO
- City
- Ballwin
I tested negetive for C9 a while back and today my results from the Envite ALS panel which includes SOD1 came back negative. My most recent EMG a month ago came back negative. Doctor said it it still possible to get ALS Even if gene tests come back negative and is something to keep watching. My mom passed away from bulbar onset. Just don’t know what to do my tongue is shrinking and can can see fasticulations. Doctor saw them to. My tongue has been sore especially at the tip of my tongue which I heard could be an early bulbar symptom. Is there another gene I can for ALS? Just would wanna get into a trial before it’s to late and I’m in bad shape. I am convinced I have ALS all bloodwork and every possible neurological test has been done and it’s all negative which to me points to ALS. All over Muscle twitching Tounge shrinking lip and chin twitching mother having it to me points to me having ALS
what to do ?
FOODIE 1
what to do ?
FOODIE 1