About 18 mo's in

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Allen

New member
Joined
Oct 13, 2013
Messages
6
Reason
PALS
Diagnosis
10/2012
Country
US
State
IN
City
La Porte
I'm very curious my biggest complaint so far is that I've lost all of my core muscles, finding it very difficult to walk, carry anything, and to bend over. I've been lucky not having lost use of legs/hand/arms etc.
Is there a normal area where weakness 1st starts or does it affect people differently?
I've just recently lost the abilty to control the little finger on my left hand. I do experience a great amount of fatigue, oddly I can seem to have a ton of energy then crash moments later. Is the all normal w/PALS?
 
Sounds familiar. Mine stayed in my right hand for 18 months. Early on I took Mestinon, a med for myasthenia gravis at 1/2 tablet after meals. Worked really well for the first 2 years. The biggest issue was overdoing it one day and crashing the next. We are all really different. Good luck!
 
Hi Allen and welcome.

I'm afraid everyone is so different with this disease it is incredible.

We have had to take the tactic of 'anything can happen' and whatever parts deteriorate fast just do that and what goes slower we rejoice at.

You will find the more others you talk to that you will notice that some PALS progress very similarly to yourself, but there just isn't a real 'typical' scenario.
 
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