Originally Posted by mj

I have already asked a few questions, but am still unclear...sorry in advance to be so long winded....after over a year of progressive difficulties, I currently experience a chronic sore, stiff and tired neck. Sleep is quite interrupted in part due to this. Shortly after my day begins, my thighs become fatigued with activities as simple as doing laundry or sweeping my floors. This has recently developed in both forearms as well. Gardening has become quite tiring and I am limited in my ability to bend,squat, grip and carry veggies. If I apply pressure to my thighs or forearms, it feels as tho they are bruised. I have zero energy on most days. Travel wears me out ridiculously. My stamina for almost any activity is quite poor. I have waves of exhaustion for no apparent reason. I frequently have a slightly droopy eyelid and it is noted that with excessive activity, my eyelids seem to swell and I get red lines under and around my eyelids. My vision seems wrong. I freq have swelling in between the knuckles on my hands, esp with activity. Sometimes I feel as though my body is puffy, but it isn't. I am often short of breath, especially with any type of exertion. I have freq jaw pain, sometimes with chewing, but sometimes for no reason. My words occ get tangled. On the odd day that I may feel well, I tend to attempt a favorite activity (like taking a walk or maybe even a hike), and always experience trouble the next day or even two. These good days are less frequent now and always cause me alarm as they seem abnormal now. I can generally experience relief from fatigue after a short time of rest, but it doesn't last long. I generally begin to feel worse around 3ish and into the evening. ALL clinical tests have proven to be negative. I started a trial of Mestinon 3 weeks ago and was unsure re any effect until the timing was switched from lunchtime to supper time. At that point it seemed that my evening symptoms diminished and I actually looked forward to that later dose. Last evening, I was out and did not have my pills with me. By the time I got home it was late and I thought I would skip this dose to see if I noted a difference. I do note more neck/jaw rigidity this morning, but wonder how much is reality or just in my mind..can anyone relate to this or does anyone have any helpful input? Thanks