Hi GG, and welcome... I am 2 yrs. on Mestinon, with very good results, and no serious side effects. I take with a few crackers to avoid stomach upset. The 1st 6 months-1 yr. after dx can be the most difficult to get through as the treatment that works best for you is being determined. Despite this cross, most of us get by OK....

Sorry you had to join but lots of help here. The twitching muscles from mestinon usually subside. Keep a log of symptoms, meds ,side effects reduction in symptoms and daily life. Days that are busy physically and mentally tend to flare mg. Good source of information is mgfa.org. many states have support groups listed there. Bring log and list of questions to dr.he can adjust meds etc based on actual info vs our sketchy memory. Yes it's overwhelming but does get better mentally and physically. Take care!!!!

Hi GrecoGirl!

I was just diagnosed myself (two weeks ago), and it has been a whirlwind, going from thinking I just had Bell's palsy to finding out I have MG and have to deal with medications and treatments. My advice is to not assume that every treatment you read about online is going to apply to you. I felt SOO Much better after talking to my doctor once they had all the blood tests and the chest MRI done, so now we know what we are dealing with and have a plan of action. The scariest part was waiting for those test results to come back not knowing what else they might find, and I found I spent a lot of time worrying about all the what ifs. I think you have to go through a period of "mourning" so to speak, after which you start to just take it one day at a time. I know that when I stopped focusing on my condition and what it might mean for me all the time, I started to feel kinda normal again. A weaker, more tired version of normal, but at least I'm still there (and so are you!).

Anyway I had NO side effects from the Mestinon, and it helps tremendously with my symptoms. It does start to wear off after several hours, but as long as I can take a break at the right time, it's manageable. I know folks have worked with their doctors to adjust timing/dosage on the Mestinon to work best for them.

It's definitely a journey, but I'm optimistic we will get it under control.

Hang in there! this is a great place to start, it helps to hear from others who know EXACTLY what you are going through!

Hi GrecoGirl,
Welcome to our wonderful group. I've been on only Mestinon for 2.5 years, first at 60mgx3 and then 60x4 for just over a year.

I am so glad that Mestinon has worked very well for me - minimal side effects but lots more muscle strength and breathing improvement on it. I might have to add more drugs in the futue but some of us are long-time Mestinon only users.
Flutebell

Thank you all for your quick response about the Mestinon. I am on my way to the pharmacy to pick it up. I am going to try and take the minimum dosage, even if it takes longer for it to work. This has been three months of hell, not knowing, 3 normal blood tests and the first EMG was low abnormal, but the weakness progressed, had a bout of double vision, but it cleared up in about five days and so far, I am okay.

I had another blood test yesterday and a TSH for thyroid. I will be back here daily to check on messages from others and check out that web site.

Again thank you all so much.

I understand. Finding out that you have MG is overwhelming. Stay close to this group. Ask a lot of questions, and be your own advocate.

Eat a small snack or a meal when you take Mestinon. Mestinon can be chewed or swallowed whole. It last longer if you take it with food, and take it whole. When I first started taking it, I also gave up spicy foods, and raw veggies.

Mestinon starts working in about an hour or so after you take it, and it lasts 4-5 hours. Most of us do better when we take mestinon on a regular schedule, not as is.

The side effects of mestinon are the symptoms of the disease. I have learned to be aware of how I feel about an hour after I take it, sometimes, we need more, sometimes less. My dosage of mestinon has changed many times. Communicate your concerns about your dosage to your neuro.

I am sorry that you have MG. Hopefully, you will feel better, and have more quality of life after treatment.

I have a question about an anti musk antibody test. Did any of you have one of these? My neurologist ordered it as my other 3 blood tests came back positive and the insurance company (United Health/Medicare) turned it down and the cost is $1700.00. I guess it is a last ditch effort at diagnosing MG when all other tests are negative, but you have signs and symptoms of MG. I am going to call the University of Colorado Medical Center about this, as well as the insurance company, just wondering if anyone has experienced this.

Again, thanks so much.

Sorry I meant to say in the previous post about anti musk testing, that my 3 blood tests came back negative, not positive. Whoops!

I've had very few side effects from the Mestinon/Pyrodistigmine. I eat a banana daily, so have only had foot or leg cramps a few times. I've been on it since Oct. 2015, and honestly, I couldn't function without it.

Hi Jessica: Did you ever take prednisone?

I had the MuSK test but it took a year, with many screwups, to get it done. I'm in Canada so our provincial health care plan had to order it. I was already testing negative for AcHR antibodies and the neuro asked for approval for MuSK and LEMS antibodies. They totalled $1400 US at Athena Labs, I think. I'm negative for them too.
Flutebell

Mestinon is the most effective treatment for the symptoms of MG. While everyone is unique, in general, very few of the potential side effects are experienced with it. Most common side effects are GI related such as cramps or diarrhea. Those can be easily managed by taking 1/2 to 1 Imodium tablet daily. Remember, ALL of the side effects are temporary and there is virtually no long-term risk from Mestinon.

The scary side effects are actually related to overdosing the drug. Cholinergic crisis results from overdosing Mestinon. There is a very broad dosage range with Mestinon and in reality, a cholinergic crisis is rare. The signs of too much Mestinon muscle weakness and muscle twitching. If they happen, contact your physician right away.

Many MG patients take as many as 16 tablets of 60mg per day. Ideally, as with any drug, you want to take the lowest effective dose of Mestinon but keep in mind that may vary depending upon your symptoms.

Yes, I was on a low dose of Prednisone until I had a crisis and was hospitalized. I took 5 mg in the morning and 2.5 at night. Now, I take 10 mg morning and 10 mg at night and started Cellcept so that we can wean off the prednisone.