I noticed pretty quickly that my symptoms were lessened. But, remember we are all different.

Mestinon will upset your tummy. I had to eat a couple of bites with my does at first. I couldn't eat spicey foods or veggies either. I ate lots of potatoes, eggs, and applesauce. Things that you eat when you have a stomach virus. I also took gas x with each dose. Now, I don't need to.

You also can chew the mestinon if you are having trouble swallowing.

Good luck and keep us posted.

(It might be a good idea to keep a journal to let your doc know how you are responding.)

Barbel

My test results were the same as yours.

With me Mestinon worked after 20 minutes of the first dose on deltoids, vision and breathing. And wore off after a few hours. There was no mistaking of the temporary strength and increased muscle power after the first dose.

We have different symptoms though, I hear Mestinon can hop over some symptoms and have an irregular effect with others.

Make sure to keep a log even if there are no changes. Good luck with continuing this, the other test and also with all the next steps you have regardless of Mestinons effectiveness.

Hug from


Calmday

I hated taking it at first. Stomach just grumbled and growled and it still does at about 3 hrs after dose. Like Calm Day I had to take GasX alot and eat bland foods. But I could tell a big difference when I tried to quit taking it. It does help with eating and chewing and some with other muscle strength.

I am seronegative with an unremarkable SFEMG and a slightly abnormal repstim, but the first time I took Mestinon, it was like magic. After 30 minutes, my eyes became unstuck, and I could stand up. Its bad side effects have never gone away for me, but I think I am anomalous is that regard.

I have been on mestinon for three months since my diagnosis, I have had great results. All my symptoms have gone away and within a few days of starting on it. I was on 60mg three times a day but developed a twitch with my left eyelid that would come and go, my doctor lowered it to half a tablet every four hours and it has gone away and no other symptoms have returned.

I had to give up on the 60mg tablets. I could not find a dosage that would work smoothly. The times it did work, it took effect in about 40 minutes, and would last 3 hours or so. The next time, it would not have any effect. I switched to the Timespan 180 mg tablets, taking two per day. The Mestinon timespan takes effect within an hour, and seems to last about 6 hours. I need to have it with a good bit of food, or it gives me stomach cramps. Best of luck to you, and hope you find a smoother path ahead.

Not within a month, within 20-40 minutes depending on how empty your stomach is. Though, it seems some people (me included) do better with a steady stream of mestinon in their system instead of waiting until your symptoms escalate before taking another dose.

One thing to check is the freshness of your pills. The very first pill I had was in the hospital -- fresh, properly stored, and invidually blister packed.

Those worked magic within 20-30 minutes without fail, and I was only given 30 MG at a time during severe breathing trouble which I think was crisis or near crisis along with extreme neck, arm, and leg weakness.

My first Rx outside the hospital were only a couple months from expiring, and I've no idea how they were stored. They had a distinctly lesser effect. Once I found a fresh source it was like magic again (they order just for me, nobody in my area seems to use mestinon!). I still have to beat the pharmacist up each time to get a dessicant in my bottle, but it's always fresh from the factory or the remnants of my previous refill.

If you want to try charting your symptoms to give you a better idea of how and when the mestinon starts/stops working or if it makes a difference at all, here's a printable chart:
http://templates.openoffice.org/en/node/9298

Eve, It's all so frustrating, isn't it! When I started on Mestinon a little over a year ago, I remember my neuro asking me if it helped, and I remember telling him that I thought it did but it was hard to say--there was nothing dramatic. He told me to quit taking it for a week, then start it back up again. When I did that, I could really see a difference. Stopping Mestinon made me feel like I was slogging through dry sand; starting it back up again just made my legs feel light when I was walking. I couldn't perceive the good Mestinon was doing for me initially, because I had ramped up the dosage relatively gradually. My symptoms were also relatively mild a year ago, which made it harder to see what the medication was doing for me. My experience is that you should be able to feel a difference from taking Mestinon in a few days, but judging from what others have said, it might take the full tablet dose to make a difference for you.

Praying for you!
Pat

Also, it can take a couple hours to peak. When I am at my worst I sometimes cannot get functional until the peak, and then it doesn't last long. The way to manage that is see if you start getting even worse right after 2 hours, because if so, you know you didn't take too much and probably need more. Rosie here on this site doesn't really respond to Mestinon, so it can be varied. It took me a long time to figure it out. Each person responds differently.

Hi Eve,

I am seropositive and was first treated with high dose pred (90 mg). and mestinon. The prednisone greatly helped my symptoms, but mestinon had no real effect, except for stomach issues. So, my neuro had me stop taking it. My neuro said it's not that unusual, some mgers just don 't respond to it. The one thing that works magic for me is IVIG.

Good luck!

Judith

Thank you all for replying - I really appreciate them all and all of you suggestions and information. I noticed this morning that walking seemed easier and my legs lighter? My chest pressure has eased and my eyelid is less droopy this afternoon. My facial droop still seems the same so far but I will be ecstatic to be able to move an breathe more freely! I'm trying not to get too excited just yet but I am more hopeful.

One interesting thing is that I've always suffered with occasional migraines with aura and my Mum noticed that they went away when I was ill 9 years ago but as the symptoms settled, the migraines returned until this flare up began in February when the migraines stopped again! After 2 30mg doses of mestinon I had my first migraine last night! This could be coincidence or maybe a good sign....only time will tell but one thing is for sure - my body is definitely wired up wrong! Lol!!

Thanks again everyone - you will never know how grateful I am to have found you! x