[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

[Stellatum]

Most of these symptoms do sound a lot like MG. I'm wondering what tests you've had. Just blood tests? Have you had a single-fiber EMG? That's a test where needles are inserted into your muscles and left there for a few minutes while you gently clench your muscles. A lot of us here who are seronegative (blood tests can't find the antibodies) have been diagnosed with MG by a single-fiber EMG.

Abby

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

[mj]

I did have an EMG on my arm, but I did no muscle clenching until the end when I was asked to clench my fist....I was told it was "iffy" and likely showed artifact. What a very frustrating and helpless happening this is..

[Stellatum]

Originally Posted by mj

I did have an EMG on my arm, but I did no muscle clenching until the end when I was asked to clench my fist....I was told it was "iffy" and likely showed artifact. What a very frustrating and helpless happening this is..

My understanding is that a regular EMG doesn't usually diagnose myasthenia gravis, but a single-fiber EMG does. I can't tell from your description which one you had. I know that any neurologist can do an EMG, but only certain neurologists who specialize in neuromuscular diseases can do a single-fiber EMG.

Would you consider asking your neurologist to refer you to a specialist? You might have to travel. I got my diagnosis in Boston from a doctor who specializes in MG. My local neuro did two single-fiber EMG's on me and got "borderline" and "slightly abnormal" results and was unwilling to diagnose me. He sent me to the MG doctor in Boston, who did a specialized kind of EMG on my face that involved electrical pulses to make the muscles contract. His findings were strongly positive for MG. After that, my local neuro was willing to treat me.

Abby

[mj]

I live in Canada and it is not quite that easy. I had to fight for a long time to get any type of referral from my GP. He finally referred to a Respirologist as this is how everything has seemed to begin and she thought I should see neuro. This was 1 year after I 1st saw my GP...a neuro consult here can take up to 2 years due to demands. I did manage to get into one who is 2 hours away as our local ones are booked..Can't get a new GP as there are several thousand persons in my area with no GP at all....All I know re my EMG is that he stuck a needle in my arm a few times and watched a monitor.

[Alberta Ron]

Which city or Provence do you live in. There are some excellent Neuros here that are knowledgable on MG