OK ... I will try to give you some thoughts that I have. AND, I only have about 3 months experience having first had symptoms (eyelids AND double vision) in December 2016 (about 3 months ago). So I am not all that knowledgeable abouy Myasthenia Gravis.

The first thing I would want to know is. Do you have double vision? Or is it just your eyelid that is drooping?

What is your daily dosage of Mestinon that you are taking?

How much is the MUSK test in $$. Is it real expensive? If not expensive and I needed it ... I would pay for it.

About me. I have OMG since December. Mestinon since mid January. The double vision has only improved in the past two days. I have taken it for a long time to just get improvement in the last 2 days.

Initially.... I took 60mg every 8 hours for 30 days. (90 pills total ... didn't help.... that's 1 pill every 8 hours) Called my Neurologist and complained to him and he said to start taking 2 pills (120 mg every 8 hours). So that is where I am with taking Mestinon and my improvement just happened 2 days ago. So you see I have taken a lot of Mestinon. You may be expecting the drug to work rapidly. I don't think it does all the time.

Good luck on your journey. Remember I have just begun my journey with MG. My doctor authorized my increased dosage of Mestinon. Positively do not increase your dosage without approval from your neurologist. I wouldn't want anyone else to do that either.

Eat a healthy diet and read all you can.

I was diagnosed with ocular MG first by an eye specialist with the "ice pack" test. He put an ice pack on my eyes for about something like 5 minutes and then removed. My droopy eyelid (ptosis) went away for awhile. Then the blood test (which was positive). My ocular MG moved rapidly to general MG.
I had to take about 60 mg of mestinon (pyridostigmine) every 2 hours to function at the worst. Sometimes it takes more than the doctor prescribes at first.
If you have MG, it is caused by the immune system producing antibodies that attack your own nerve to muscle connection. Although it is always good to have a good diet and lifestyle, there are very few folks who can get by on MG treatment without some pretty strong drugs to slow down the immune system. MG has different symptoms for different people and treatments that work for one may not work for another.
However, the standard treatment is Mestinon as needed with prednisone or other immune suppressing medication. Before these medicines were available, life with MG was very bad and most folks died from it. MG is a life -threatening disease and so not something to leave untreated. What happens is that the immune system attack continues until so many of our voluntary muscles are destroyed that we no longer can breathe without assistance. Treatment early on will prevent us getting that serious, and generally can give us a reasonable life. There is no cure, however some folks go into remission for varying lengths of time (I am now 4 years in a remission). If you have MG, you really need to take it seriously and get treatment.
Good Luck

Thanks for the replies. I have had no Double vision. I just bought a house and am in the process of renovations soo I can't afford any additional tests let alone food at the moment. As stated in my post ive been seeing doctors for months. I reached my out of pocket max on my insurance in 2 months so now I can keep going to my doctors and getting teatment and drugs at least. My main frustration is our pharmaceutical industry that will pay for 15 medications for me to be on but won't pay for a simple blood test to find out if I have the disease. Treatment with medication is not a cure or healthy lifestyle and should be the last resort instead of the first. Unfortunately all the meds they put me on have worked immediately. I think I was in denial for sure about having OMG. I hope it will stay ocular for awhile. I have 2 more appointments this week to talk about a long term plan.

I was diagnosed with ocular MG April 2015 but it took a long time to get there. I had sudden onset ptosis in my right eye in October and in my left eye in November of that year. I originally went to my eye doctor and and was tested for MG, but my test came out negative and I was told I didn't have MG. Fast forward 5 months with no answers from any of the multiple doctors I went to. My neurologist put me on mestinon to see if it worked at all and it did, so he followed up with the "ice pack test" which also helped my ptosis. The last test he ran to really confirm was an EMG on my face. It can be a very frustrating road to figuring this all out, and apparently only about 80% of people with MG have the antibody that will show up in a blood test. Unfortunately, from my research it seems that medication is necessary as there is no cure for MG. If you're able to get to an MG specialist that could be beneficial, as they did a full test to see if I had muscle weakness throughout my body and a specialist can really help with a long term plan. My neurologist treats me regularly, but I try to make it to an MG specialist once a year to make sure it hasn't spread.

I found it to be a somewhat scary diagnosis-researching it can be good and bad, as you learn more it can become less worrisome but as the symptoms vary so much person to person, it can also cause anxiety to read about what you haven't experienced. I think learning as much as you can though is vital and I also began to meditate following my diagnosis for my own well-being. Good luck with everything, I definitely understand the months of doctors visits with no answers but keep pressing on!

I have ocular MG and tested positive through the blood test, I have been in remission since 2013 with no drugs now. Knock on wood. Mestinon made no difference with the diplopia. I never had the eyelid droop. I believe the steroids, and the thymectomy at the right time made this possible.

It is frustrating to not have definate answers. I have also tested negative. In my case I am taking 30mg not the 60 because 60 made my eyes worse until it was painful to move my eyeballs and they had little range of motion. Too much mestinon can worsen weakness and for me, it weakens my eyes more than my body if that makes sense. I find that lack of sleep give me more droop and blur during the day. Do you have double vision?
FYI, there is a new test for negative MG. I heard about it from my local support group. Maybe you can talk to your MD about Lpr4 and agrin test. Also I have insurance issues and found that Athena labs may be able to help. So while my MG labs were like 1k each, Athena did a bundle for 300. Thank God your doctor's are on board and treating you despite the negative labs!