Sammy D
New member
- Joined
- Jan 25, 2021
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NC
- City
- Havelock
I really need to talk about my situation with people who understand. 8 years ago I developed severe fatigue and muscle spasms. I ended up seeing a neuro because docs found UMN abnormalities. My EMG was abnormal. They did everything to help me, brain and full spine MRI, Spinal Tap, Toxin panel..the only thing they diagnosed was, spasticity, clonus, mild brain atrophy and frontotemporal lobe lesion. My neurologist then fought for me to have a genetic test for spastic paraplegia. Still no answers. I went on with my life as best as I could and now its time to go back. Lots of muscle spasms with atrophy and stiffness. My left side of face and tongue as well. My question is about Edema....I am on blood pressure medicine and my BP is great. (Two hours into the day my feet, ankles and legs swell up..I can barely wear shoes. Sometimes only my right foot/ankle swelling and thats the one that has visible atrophy. If I try to do really hard things like paint walls my hands swell up. I have never heard of anyone with ALS having swelling early on.) My doc said its not my heart. He is sending me back to specialists at UNC.
Just wanted to say that even though I am on the radar for ALS my docs are working hard to find something else. So I didn't think it was appropriate to enter this question anywhere else. I am really in need of advice/experience with this issue. I pray I don't have this disease so I am happy to be posting here and not in another category. Thanks
Just wanted to say that even though I am on the radar for ALS my docs are working hard to find something else. So I didn't think it was appropriate to enter this question anywhere else. I am really in need of advice/experience with this issue. I pray I don't have this disease so I am happy to be posting here and not in another category. Thanks