jakela
Member
- Joined
- Apr 25, 2013
- Messages
- 10
- Reason
- Learn about ALS
- Country
- US
- State
- MI
- City
- Novi
I had a sore lower back for many months and then it seemed to spread up to my shoulders. During this time, physical therapists noticed my muscles were twitching by my lower back. I had a trip and a fall and noticed that dancing and jumping was a difficult for me. I was thinking, "wow, I am getting old fast". Another physical therapist told me that my leg strength seemed a bit weak.
So, now I recently went to a neurologist and he ran and EMG. He said I had no nerve degeneration and that my strength seemed decent. But, I have had constant fasciculations and twitching in my muscles for probably about 5 months now. I never really noticed them until about 2 months ago though. He noticed them strong on the EMG and said he was sort of confused why my nerves seemed healthy but there was such strong twitching and fasciculations. I told him they were also in my abdomen, but he sort of ignored that and said it is probably from coffee. Problem is, I have not had one caffeinated drink of any kind for over 6 months. I drink strictly water and fruitjuice. I asked him about the odds of this being ALS. He would not be clear because he did not want to be held to an answer. But, he did say there is a possibility. But also talked about general fasciculations. Perhaps benign? So I am left thinking, I either have this benign twitching thing, or a terminal illness. He prescribed anti seizure meds for the fasciculations. If I have limited time, it would be good to have some idea of that as soon as possible. I know I am not alone in all of these feelings and empathize in such a heartfelt way for all suffering through this. I have a followup in 4 weeks, but it seems like a long time to wait and I am left wondering the obvious question, "will I have to leave my family early, or do I have this thing called BFS syndrome"
Thanks in advance for any help.
So, now I recently went to a neurologist and he ran and EMG. He said I had no nerve degeneration and that my strength seemed decent. But, I have had constant fasciculations and twitching in my muscles for probably about 5 months now. I never really noticed them until about 2 months ago though. He noticed them strong on the EMG and said he was sort of confused why my nerves seemed healthy but there was such strong twitching and fasciculations. I told him they were also in my abdomen, but he sort of ignored that and said it is probably from coffee. Problem is, I have not had one caffeinated drink of any kind for over 6 months. I drink strictly water and fruitjuice. I asked him about the odds of this being ALS. He would not be clear because he did not want to be held to an answer. But, he did say there is a possibility. But also talked about general fasciculations. Perhaps benign? So I am left thinking, I either have this benign twitching thing, or a terminal illness. He prescribed anti seizure meds for the fasciculations. If I have limited time, it would be good to have some idea of that as soon as possible. I know I am not alone in all of these feelings and empathize in such a heartfelt way for all suffering through this. I have a followup in 4 weeks, but it seems like a long time to wait and I am left wondering the obvious question, "will I have to leave my family early, or do I have this thing called BFS syndrome"
Thanks in advance for any help.