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keane

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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.
 

keane

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Not sure if it is possible to delete posts, but my wife already called our Neuro and he wants to perform a follow up EMG tomorrow.

Thanks
 

Al

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You can only delete for about 15 minutes after posting but Cindy or I can do it if needed. Might as well leave this and you can post results here tomorrow. Good luck.

AL.
 

brendapals

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keane,
Hope all goes well with your appt tomorrow,
take care,
-b
 

keane

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Based upon EMG, progression, and exclusion of more common causes, the Neuro stated that ALS is likely, but he would like to watch the continued progression and seek the 2nd opinion at the Mayo, which is still being scheduled.

With the new symptoms, I initially wanted to better understand what was going on during my doctor visits and tests, but now I've decided to take a break from researching neurological diseases and let time take care of the final diagnosis.

Thanks for the helpful responses and support.
 

ktmj

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DANG - hate to see any new diagnosis. Sorry to hear that keane - I wish you the best.
 

Al

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Would have liked to hear better news too but you can still hope the Mayo finds something else.

AL.
 

Zaphoon

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Keane,

Here's hoping they get you into the Mayo quickly and for a diagnosed of something other than ALS!

Zaphoon
 

brendapals

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Keane-
Darn it, I was sure hoping it would be anything other than ALS! Hope you're doing good this weekend.
take good care
-b
 
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