My 13 old is currently being tested for MG. She is seronegative but has had a inconclusive/ mildly postive EMG. (there was equipment issues with her test, so the baseline was difficult to keep steady)

The Pediatric Neuro specialist decided to to a Mestinon trial and has her on 60mg 3 times a day. After her noon dose today (2nd does for the day and this is our first full day) she is saying she feels shaky and sometimes her heart beat is pounding a little. She went out to play and was dancing with friends and got really shaky and came in I have made her rest and she is feeling less shaky. It is about 2.5 hrs after her dose. I have a call in to the neuro nurse but am wondering if anyone else has experienced this.

There also does not seem to be marked improvement of her eye droop which is her primary symptom right now. Any improvement is very slight.

Thank you for your time.

Dawn

It sounds like the dose may be a bit high. If she is seronegative, the chances of mestinon improving ocular (eye) symptoms isn't that great. It works better in general on people who are seropositive. (I'm negative--been there, done that!)

Good luck to you and your daughter. Hugs for your "mommy heart."

I hope your neuro office has gotten back to you. I agree that the dose seems a bit high as a starting point. There is a little bit of trial and error with the dosage that you, your daughter, and neuro office will have to work through.

MG is hard to figure out so don't get discouraged. I hope things begin to improve with your daughter real soon.

You mention that your daughter is seronegative. Was she tested for MuSK?

In MuSK myasthenia, there is a much less stable response to mestinon. The shakiness you describe may be a disorganized activation of muscle fibers (called fasiculations). It is usually not dangerous but quite inconvenient.

Increased activity can make this worse, while rest leads to improvement.

In some patients a different medication (such as mytelase) may be better tolerated.

Interesting dose at 60mg 3x/day.... I am in the dx process and my doc just started me (age 37) at 30mg 2x/day. So far I've only taken 30 mg 1x/day and it's worked wonders for me.

I have not heard back from the neuro office yet. But the symptoms have gone away and they did not repeat with her 3rd dose but we spaced that one a little farther out. I am going to space the doses today out to 5 hours instead of 4 and see if it helps. After this mornings dose one eye that had mild ptosis is better the other that more ptosis is better but only marginally.

She has had a few symptoms of generalized over the past few months so I am also having her pay attention to those - although they are mild and hard to tell. She has had a few times after activity were she has difficulty holding onto things with her fingers - only lasts a few minutes if she rests. She has also had a couple times were she has felt she could not lift a child she babysits and also had to sit down because her legs felt week. Last weekend we went camping and by the end of the day the entire right side of her face was drooping some. The ptosis has never progressed passed half closed in her right eye yet. She has had very limited boughts of double vision - more like a shadow behind the object. This all has came on fairly quickly. pics form Nov-Jan show no signs. Mild signs began to show up in photos in Feb and by March I noticed it visually. I can not pinpoint an illness or event that may have contributed to it starting.

She has not been tested for MuSK yet but that is one they will be doing next. The neuro specialist who did the emg and started the medicine is not our first contact neuro so we are waiting for them to confer and for the results of the week of medicine to decide on a future course.

Oh my that got long I am sorry. I am so glad to have found a site with so many who have experience with MG. It is quite a confusing disorder. Thank you all for your replies.

Puberty could very well have started the ball rolling. Many women also notice first symptoms after giving birth (I did.) Any vaccinations in the last 6-12 mos?

It sounds like you have been observing things nicely. Your doctor also seems like he's on a good track as well. I'm glad your dd has felt better since that "bad spell."

Don't apologize for the length of your post. Everyone here 'gets it' and I thought your post was perfect!

I am really impressed with how you and your daughter are approaching this. With your observation skills and your daughter's ability to recognize and communicate the differences in how she is feeling; you will be a fantastic help to each other...AND your neuro.

Lots of folks here keep a journal...just to jot down the ups and downs, the possible triggers for them, important differences about how meds make us feel, any new symptoms, etc.

I keep one and before my neuro appointments, I just quickly review to see if there is something I should remember to mention at my appointment. It never surprises me how that journal has helped me identify the differences (improvement or otherwise) from one appointment to the next (mine are now 6 months apart).

Hope the Mestinon continues to help. Pls let us know how it's going.

I have been notified by Sanofi Pharm that they are no longer manufacturing Mytelase.I have been using this med for about 60 yrs and really hate to change to a new med. Do you know if Sanofi was the only co. that produced this med? Are you aware of any problems patients have encountered when they switch from Mytelase to Mestinon -which my doctor is suggesting-(other than than determining the correct dosage)? Thank you for any advise you could provide.
Phil

I'm 25 years old, and I am on my second trials of Mestinon. The first time I took Mestinon was back in November 2010, and as they worked up my dosage, by the time I got to taking a full pill at one sitting, my thigh muscles were spasming so badly I could see it through my jeans. I hadn't taken Mestinon again until just recently. I've been on it for 2 weeks slowly increasing the dosage, by the time I got to taking full pills again, (which was actually last night), my calves and thighs were staring their twitching and spasming again, as well as feeling tingly (like pins and needles). They also felt shaky where I couldn't walk my normal pace because I felt like if I did, I would fall (like the top part of my body would try to go, but my legs wouldn't be able to keep up--thats a bad description sorry).

We contacted my neuro specialist but haven't heard back yet (we see him in 2 days anyway). The first time that happened to me was much worse, and let me tell you it was SCARY. I could also feel it in my cheeks like where my jaw joint is on both sides of my face.


I think it's also done nothing for me. I honestly feel like I've felt better WITHOUT the medicine than with it. My speech has actually gotten worse since I've started it and my eyes have been fine all along (since May anyway). I am MuSK positive too. Mine was first diagnosed with an EMG because my original blood work came back negative, but just recently got the longer (and waaaay expensive :x ) one done, and it showed me MuSK positive.


Hope you can work it out with your daughter I guess the good thing is, is from what I've read and was told it doesn't stay in your system too long so those feelings will go away, they are just very annoying until they finally do.