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Andersk2

Member
Joined
Apr 4, 2016
Messages
27
Reason
DX MND
Diagnosis
04/2016
Country
Us
State
Oh
City
East Ohio
I have been newly diagnosed as "Possible ALS" by my Neurologist and Primary physician following a whole series of testing. Most of which I didn't even understand. I actually was seeing the Neurologist for a seizure disorder when we discovered the muscle fasciculations slowed EMG waves and Hypflexia. I had marked clinical weakness for about two years that every one thought was due to the seizure activity and we were looking for MS or Thyroid disease. However, Within 3 months, left handed atrophy and foot drop set in. I'm now awaiting my appointment to the neuro-muscular clinic at OSU. I have taken the precautionary insurance steps, etc.

Here is my question on atrophy. My Dr. Advised me to write down any new signs and keep track. I'm really not completely sure what I'm looking for. So, I check for changes in sizes, shape, new lines or dimples in muscles that I didn't see before. What I have noticed, is in the ares where the limbs are getting progressively weaker, the skin is not as tight, and the muscles feel "bumpy". Is that atrophy? Or just sore muscle? I make it a point to stretch and do some type of excecise daily to try to keep what muscles I have left strong. But I know in comparing one side to the other, there is a difference. I'm just not sure if it is related to atrophy or not. Given that my medical team and my husband are the only people that know, I do not have a whole lot of people to ask.
 
Maybe. Hard to tell by your description. Not sure that your neuro meant for you to track things like atrophy though. That is something the neuromuscular doctor will see at a glance if it is there. What they can not necessarily tell just by looking and probably would be important and helpful is loss of function. Examples: can no longer stand on toes to reach a high shelf, can't button a shirt, lift a milk carton, etc. if you fall ( try not to -be safe) why did you fall? Ankle collapsed? Tripped because your toes got caught because of foot drop? The more information like that the better they can figure out what muscles are giving problems. Breathing issues, swallowing, speech issues My neuro also asks about cramps location and frequency.

Stretching is good mild moderate exercise if you recover completely in an hour is good. You do know that you can not strengthen an ALS affected muscle? Exercise beyond what I said above is controversial you can search threads here for comments and discussion. Proceed with caution. Some seem to do ok , others, like me, have had permanent losses from overexertion
 
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That helps a lot. Thank you.
 
Atrophy is a decrease in muscle mass. Nikki is right that your doctor will be able to detect this. My husband first noticed it when his wristwatch became loose on the left wrist.

Sharon
 
So, I'm not really watching for decreased muscle as much as increased weakness. That's what I should be tracking and reporting? I know that you can not regenerate lost muscle, however, it was my goal to keep what I had by staying as strong and healthy as I could, however, it sounds like if I push myself too much, I may actually be progressing the disease? What I have now is clinical weakness on the left side. Atrophy in left hand, forearm calve and foot, foot drop, fasciculations, and hyperflexions, with an abnormal emg. They are watching right side while waiting for my appt. to neuro muscular specialist. I have an appt. to repeat emg this Wed.
 
Hi Anders, you are correct. It's more of what you could do yesterday and can't do today that your doctor will want.

Pushing yourself is not good, you can't rehabilitate what's not there. Saying that, there are definitely people on this site who do weights and 'reps'. Sorry, I really am guessing when I say that could be...dunno. Don't want to get it totally wrong!

Range of motion exercise is great. I think, as you know your own body, talk to your physio about what will work best for you.

I truly hope it's not ALS. All the best with the next appointment.
 
Thank you so much. I never in a million years thought I would be praying to have something like MS, Addisons or Parkinsons that was being overlooked..... :) But here we are.

Lots of Love.
 
Had a second EMG yesterday. This time on my legs. Apparently I also have have atrophy on my left foot. The needle part of the test showed " low level waves" and the MCS and SCS showed marked differences between the left and right sides. My neuro said it was definitely neuro muscular disease and canceled my OSU appt. And is referring me to a Dr. at Cleveland University. Your thoughts?
 
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