keane
Active member
- Joined
- Jan 6, 2009
- Messages
- 30
- Reason
- Learn about ALS
- Country
- US
- State
- IL
- City
- Washington
I would appreciate some advice concerning new symptoms:
About a month ago, I visited a neurologist with severe weakness in the left hand/wrist. In other areas such as feet, I was having severe cramps. After numerous tests ruling out MS, compressed nerves, etc, my neuro basically told us that he was stumped, and only time will tell (he said PLS was possible, but too early to tell). Exagerated reflexes on the arm and opposite leg made him feel that it was definately neurological. He suggested physical therapy to document muscle size and strength because I have larger than normal muscles from years of weightlifting.
He also asked my internist to try for a 2nd opinion at the Mayo, but we've not heard back.
Since then, muscle twitching in larger muscle areas is more frequent, but I only notice it when it wakes me at night. Also, in the last physical therapy session, my grip strength on my strong hand was significantly lower.
My wife and I have decided to maintain an optimistic mindset, and count every day as a blessing, but a recent new symptom makes us wonder if we should demand a closer appointment, or just wait another month for the follow-up. I have been awakened several nights in a row with twitching activity in my right leg (which previously showed exaggerated reflexes). Yesterday, when standing after waking, I almost fell. In the hip area, the muscles in the front of the hip that lift the leg appear much weaker. I can lift my leg for a few seconds, but it tires very quickly and I can barely lift it again without significant rest. I'm starting to limp after walking a short distance.
Based on your experience with neuro's, would you wait or risk being perceived as a over-reacting patient by demanding a followup immediately? While the previous EMG was not normal, the neurologist indicated that it was too early to suspect something like ALS because only my left arm was weakened. He wanted to wait a couple of months, then check other extrememties.
While I recognize that the members are not physicians and cannot diagnose, your recommendations would be valued.
About a month ago, I visited a neurologist with severe weakness in the left hand/wrist. In other areas such as feet, I was having severe cramps. After numerous tests ruling out MS, compressed nerves, etc, my neuro basically told us that he was stumped, and only time will tell (he said PLS was possible, but too early to tell). Exagerated reflexes on the arm and opposite leg made him feel that it was definately neurological. He suggested physical therapy to document muscle size and strength because I have larger than normal muscles from years of weightlifting.
He also asked my internist to try for a 2nd opinion at the Mayo, but we've not heard back.
Since then, muscle twitching in larger muscle areas is more frequent, but I only notice it when it wakes me at night. Also, in the last physical therapy session, my grip strength on my strong hand was significantly lower.
My wife and I have decided to maintain an optimistic mindset, and count every day as a blessing, but a recent new symptom makes us wonder if we should demand a closer appointment, or just wait another month for the follow-up. I have been awakened several nights in a row with twitching activity in my right leg (which previously showed exaggerated reflexes). Yesterday, when standing after waking, I almost fell. In the hip area, the muscles in the front of the hip that lift the leg appear much weaker. I can lift my leg for a few seconds, but it tires very quickly and I can barely lift it again without significant rest. I'm starting to limp after walking a short distance.
Based on your experience with neuro's, would you wait or risk being perceived as a over-reacting patient by demanding a followup immediately? While the previous EMG was not normal, the neurologist indicated that it was too early to suspect something like ALS because only my left arm was weakened. He wanted to wait a couple of months, then check other extrememties.
While I recognize that the members are not physicians and cannot diagnose, your recommendations would be valued.
