Jabba
Member
- Joined
- Sep 13, 2021
- Messages
- 22
- Reason
- DX UMND/PLS
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
- City
- Victorville
So, this is my first post. I have been having trouble with my left leg for almost 2 years. I was actually running a half marathon (my 6th one) and fell at the start. I thought I had tripped and then I had trouble running the rest of the race as the left leg just didn't want to work right. Since then I have given 50 vials of blood, had at least 25 MRI's, several CT scans, bone biopsies, 2 EMG/NCS tests (shows progression), received multiple "it may be's" like, multiple myeloma, Parkinson's, ALS, PLS, spinal issues, multiple small strokes, etc... Most recently, my Neuro say's it is a upper MND and he can't rule out PLS/ALS! So, no real diagnosis! Is this normal? My balance is shot, I have fallen multiple times, drag my left foot constantly, have severe (like make me cry) night time cramping in the left leg, mostly inner thigh and calf, severe left leg tremors only at night and so bad they shake the whole bed. I still try to walk about 4 miles a day, work out with weights 3 times a week and work in the yard/house. I have attended several ALS clinics and they seem confused because I am not deteriorating more quickly. That's my story in a nutshell and I am concerned, confused and worried about my family. Sorry about being so wordy.