I'm not officially diagnosed yet--sero-negative and borderline EMG--but my neuro put me on Mestinon to see how it works. I've been taking it for four days. My most troublesome symptoms have been weak neck muscles, extreme tiltiness (I'm pretty sure that's from weak back and side muscles), and trouble with my eyes (pain, a pulling feeling, and double vision).

Since I started the Mestinon, I've had all of these symptoms, but milder. And the times they've been bad have mostly been right before my next dose is due.

Each additional day that goes by without a "crash" (too tilty to walk at all...an afternoon on the couch because I can't hold up my head...double vision that puts me to bed) makes me more confident that the Mestinon is doing something. On the other hand, I tried to do one waltz with my husband the other evening and exhausted not my legs, but my arms--holding them up that long. So that was discouraging.

I hope the neuro will try me on a higher dose. But I'm already taking 3 pills a day, at 8, 12, and 4, 60 mg. strength. Isn't that already a rather high dose?

Thanks to everyone for the warm welcome, and the information and support.

Hi, I was wondering if you see a Neuro Muscular Specialist who has experience dealing with patients with MG?As this is very important.
Hadn't heard of Border line SFEMG. I always heard, either it is, or it isn't. But I'm certain technology is changing all the time.
I sometimes have a subtle change in my weakness, and sometimes have a huge change.
If the mestinon works for you, and it sounds like it does, you more than likely have Myasthenia Gravis. For which, I'm so sorry.
The dosages for each person is different. I was taking up to 5-60mgs daily, but it affected my stomach something terribly. Now, I take one or two a day. Mostly in the evenings, unless I have a medical test that involves me to be active in the morning hours.
Mestinon didn't work for me that well for double vision, but prednisone did, and does.
I hate seeing anyone be put on Prednisone, but it might be necessary. Also, they may put you on other MG meds, such as CycloSporine, Cellcept, Imuran, or Ivig, Plasma..etc.
Discuss these treatments with your doctor, and see what he says about them.
This may take you a while to get it all under control. Many of us are on a "cocktail" of drugs. And then it can take a couple years to get stablized, or where you and the meds are managing your symptoms to a certain degree. I wish I could offer you more info, but it really does depend on your body.
Much love and prayers
Lizzie

Thanks, Lizzie. I know this is the beginning of a long journey. Some days I find that easier to face than others. I know that I am very fortunate, though, in that my symptoms are comparatively mild, and best of all--I am so grateful for this--the Mestinon doesn't seem to bother my stomach. I don't take that for granted.

I would love to find a doctor who specializes in MG! I wrote to the MG Association, and they didn't know of any in my area (Rhode Island). They suggested I write to the Muscular Dystrophy Association, which lists MG as one of its "covered diseases." So I'll do that.

You can call them, it's faster. MDA is very helpful. John Hopkins is good, how far is that from where you live?
I hope you don't have a real long Journey, that's not fun at all.
Love Lizzie

I take 60 to 90 mg of Mestinon, depending on my weakness level. Years ago when I was first DXed with the MG I was on 120 mg every 4 hours.

So to me 60mg is not alot but we are all different. Talk to your Dr. if the 60mg is helping slightly, talk about uping it to 90mg and see what happens. As you will learn with MG things are trial and error so to speak.

I wish you good luck and continued strength.

Since it's only been 4 days, I think it might be a little too soon to increase it to 90mg. You will run the risk of possible side effects you are fortunate not to be experiencing now. It can take time to find the right dosage and going up slowly might be best. Taking them a little closer together and adding a fourth 60mg might be a better choice. Just my opinion, I'm not a doctor. Even with taking Mestinon you will still need to rest. Just listen to your body. Call your neuro and see what he wants you to do. Take care and let us know how you make out.

Hugs,
Pat

I am currently taking 30 mg, 3 times per day. I take them at 8 am, 12 pm and 4 pm.

For the first 5 months I was taking 60 mg, 1 to 2 times per day, but after discussing Mestinon on this forum, I realized that I might be taking too much (even though I was so thankful that the Mestinon was helping). At this dosage, my double vision did not go away and I still had a lot of weakness.

I got an okay to experiment with my dosage from my doctor, as long as I stayed within a certain range(60 to 120 mg per day). I found that by taking 30 mg at a time, and taking Mestinon more often (every 4 hours), it helped much more than the 60 mg.

When I take 30 mg at a time, my double vision goes away!(most of the time) Usually, with this smaller dose, I can do normal things as long as I don't do too much.

If I take a 60 mg pill I get double vision again within about 20 minutes and I have more weakness than when I take 30 mg.

I am very sensitive to medication and maybe this is why I need only a small dose. Without Mestinon my MG is severe. I am so very thankful I respond to Mestinon and don't need to consider some of the other medication with horrible side effects.

Everyone is different and I think that I am taking much less Mestinon that what most people need.

I hope this helps.

I will discuss it with my doctor tomorrow, and I will be willing to give it some more time before changing the dose. I wonder if the fact that I'm not getting side effects (except my mouth is watering like crazy! But I can live with that) means I'm not very sensitive to it.

Thanks, everyone.

Hi. I'm glad you're going to speak with your doctor first. Never change Mestinon without that discussion. You might want to get a "what if" kind of dose like going up 15 mg. while going out doing things.

With Mestinon, there are two things to consider: Dose amount and frequency of dose. Doctors will often increase the frequency first since, as Pat said, increasing the amount can lead to overdose symptoms. It can be hard when you first use Mestinon to know the difference between not enough and too much. Both too little and too much can make your muscles feel weak.

I'm glad you are feeling the effect of it. It's hard to be seronegative and have a borderline SFEMG.

Lizzie, According to Dr. Howard, there is such a thing as a borderline SFEMG. It's when enough pairs are positive but not enough for an outright positive. It shows a "tendency" towards a decrement without an obvious decrement. It's important not to ignore that since it can be that way early on in the disease process, particularly if they don't test a really weak muscle. I hope you're doing ok.

Don't think that Mestinon will turn you into superwoman! If you overdo while on it, you will still get really weak.

I hope you can figure out what is a good drug regimen for you. It takes awhile to get used to the drug let alone having this disease.

Annie