Merepage
Active member
- Joined
- Dec 26, 2012
- Messages
- 54
- Reason
- Learn about ALS
- Country
- US
- State
- PA
- City
- Center Valley
I am having yet another EMG on Friday to try to understand what is happening to my body.
General feeling of not feeling well in Jan 2012. Lyme disease? Tested but not CDC positive.
Start with Neurology in Sept 2012. Stiff neck and Fasciculations start in my left calf Sept 2012. EMG done, clean. Still feeling terribly (like flu without a fever) and twitching more, but no clinical weakness and another EMG in Dec 2012 is clean.
I move onto ALS neurology visits from March 2013 - Sept 2014 with normal exam and 2 or 3 clean EMG's. Total of 5 normal EMGs from onset in 2012 through today
3 weeks ago..and this has slowly progressed since onset, perceived weakness increasing to me, but sort of showing on exam? "you are a little weak?".. 2 weeks ago, while still feeling increasingly worse for 3 years, I started with serious shortness of breath and serious "perceived?" weakness in both arms.
I wake up 10 times a night with ultra shallow breathing (not anxious) My reflexes have been 3+ since the beginning. Neurologist not alarmed, but I do have jaw jerk reflex now. The fatigue is literally unbearable. I cant walk across a room without sitting down.
I can walk on my heals and toes but its harder. My thumbs are not working like they used to when holding something or opening it. My CPK has been normal. No tongue fasciculations. No mention of muscle wasting but I know that my biceps are smaller due to lack of use
Any words of wisdom appreciated. I am simply are hot mess for this EMG on Friday. What else could this be? My ALS neuro specialist wont see me til March which is good because she is sure it is not ALS.
Can you get UMN well before LMN or do they usually present together? Can I rely on my EMG from Sept 2014 and somehow put my mind at ease with this fatigue? It keeps progressing (slowly but surely) How will this end?
Thank you for any input.
General feeling of not feeling well in Jan 2012. Lyme disease? Tested but not CDC positive.
Start with Neurology in Sept 2012. Stiff neck and Fasciculations start in my left calf Sept 2012. EMG done, clean. Still feeling terribly (like flu without a fever) and twitching more, but no clinical weakness and another EMG in Dec 2012 is clean.
I move onto ALS neurology visits from March 2013 - Sept 2014 with normal exam and 2 or 3 clean EMG's. Total of 5 normal EMGs from onset in 2012 through today
3 weeks ago..and this has slowly progressed since onset, perceived weakness increasing to me, but sort of showing on exam? "you are a little weak?".. 2 weeks ago, while still feeling increasingly worse for 3 years, I started with serious shortness of breath and serious "perceived?" weakness in both arms.
I wake up 10 times a night with ultra shallow breathing (not anxious) My reflexes have been 3+ since the beginning. Neurologist not alarmed, but I do have jaw jerk reflex now. The fatigue is literally unbearable. I cant walk across a room without sitting down.
I can walk on my heals and toes but its harder. My thumbs are not working like they used to when holding something or opening it. My CPK has been normal. No tongue fasciculations. No mention of muscle wasting but I know that my biceps are smaller due to lack of use
Any words of wisdom appreciated. I am simply are hot mess for this EMG on Friday. What else could this be? My ALS neuro specialist wont see me til March which is good because she is sure it is not ALS.
Can you get UMN well before LMN or do they usually present together? Can I rely on my EMG from Sept 2014 and somehow put my mind at ease with this fatigue? It keeps progressing (slowly but surely) How will this end?
Thank you for any input.