frustrated
 

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

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

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

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.

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

I live in New Brunswick. Can you tell me who and where they are? Thanks

So, I have completed my 4 week "trial". I have noticed temporary relief of my rigidity with the suppertime tablet. On 2 days I added a 3rd tablet after more than usual activity (which is causing me much difficulty), and noted relief then as well. I spoke with my GP yesterday and he wants me to now take 30 mg 4 times/day for 2 weeks and then take 60 mg 4 times a day for 2 weeks and call him with an update...he has readily admitted that he has "limited experience" with MG, which may or may not be my diagnosis. Obviously, I am concerned with this. He also suggested that should this regime offer positive effect, that I will likely be dx with "seronegative MG". My understanding is that Mestinon is a help for symptom control, but is not treatment ...is this correct?

It is of course concerning that your GP has "limited experience" with MG, but then 99% of GPs are in the same position. I hope that he is liaising with an expert, with more knowledge.

For a GP to give a dx of "seronegative MG", would be unusual, that sort of decision should really be left to an expert Neurologist.

Your understanding re Mestinon is correct, but some people can and do get along fine for many years on just Mestinon.
And, as of this moment, there is NO treatment for Mestinon, that cures it. All teatments simply address the symptoms.

Simply put:
Mestinon, gives the ACH longer to work.
Immunosuppressants, suppress the anti-bodies that attack the receptors (but suppress your immune system in general)
IVg simply swaps out the blood or plasma with the bad antibodies, for blood or plasma without them.

You may want to contact the Myasthenia Gravis Support Group Canada. This is a group of the MG Society of Canada. They may be able to help you in your search. I am in the Edmonton area and we are fortunate to have a team of Doctors that are specializing in MG.

Hope this helps
Ron

is it normal in MG to have almost symptom free times or days when not doing much or to have several very exhausting, stiff days of discomfort followed by more activity than usual (which for me now seems to be gardening for a lengthy period or a few hour road trip)? This has become my life....

Yes, it is variable. By day, by hour.

It is possible to have several days feeling really exhausted, and then for no obvious reason a day when you feel fine.