Sorry to hear you are having MG. There is not clear answer that covers everyone with MG as to what the future is. Often it depends on how many other conditions we have along with MG and whether we can tolerate the treatment.
However, the statistics are quite positive. Approximately 70% of folks with MG are in the group that respond positively to normal treatments (i.e. prednisone, Imuran,cellcept, etc.). Those folks will get MG under control and, with some occasional difficulties, go on to decent lives, if not exactly normal (more like an ongoing condition like diabetes).
About 15% go into remission and about 15% don't improve with standard treatments and struggle to find an effective treatment.
There are things we can do and the most important is to get a neurologist experienced in MG and then be very persistent and insistent that we get treatment that works. A difficulty is that most treatments take months and sometimes longer to find out if they do work for us.
My neuro gave me this plan: prednisone and Mestinon for year with the idea that we would get MG symptoms mostly gone in about 6 months and then we would taper down prednisone and start on either cellcept or Imuran as a long term drug. So I took prednisone for a year and accepted the side effects. It did get me functional at high doses in about 4 months and then we struggled with tapering to find a lowest effective dose hoping it might be low enough to keep taking it long term, but we had decided that the next treatment was Imuran with prednisone with a year to evaluate that and get off of prednisone. I didn't need to start Imuran as I fell into the 15% who go into remission for varying periods of time (5 years now for me).
You really need to discuss this with your neurologist. Doctors tend to be complacent unless we are persistent in saying '' this is not acceptable, and I expect treatment that makes be better rather than in decline. " MG is treatable and most folks get back a reasonable and decent level of functionality with treatment.
So get pushy; ask those questions of why, when etc. to your neuro and ask for treatment options.
In the old days before treatments like prednisone and the other immune suppressing drugs, most folks died from MG, nearly half of them in the first 2 years. Now we don't die from it, but sometimes doctors think that keeping us alive is acceptable rather than returning us to functionality. With other neurological diseases that may be the case (MS, parkinsons..) but with MG we should expect better results, and sometimes that does mean trying a different doctor if our current one doesn't respond to our insistence on something better. But it does start with us first.
Good Luck
Russ

Thank you for the response.
I love my neurologist and don't really have a choice. My insurance only covers her and one other.
My primary finally did the right test saw that My ache level was off and told me I have it. He then went me to The Narrows Institution for treatment.
That doctor said I don't have it and sent me back. My primary tested again, same thing. I went back to Barrows, they again refused to treat.
It then took months to find a new neurologist who would see me.
She only has me in mistonin. She says she wants to put off any other meds as long as possible.
I have gotten so bad over the last year I have had to rehome most of my outside pets.I just want to be able to function.

Sorry my kindle keyboard is horrible

Some folks do get by on just mestinon, so I suppose the doctor is trying to see if you can get by that way. That would be ideal, but as you say, it is not working.

So the next step is really yours. Make a list of what you can't do anymore, tell the neuro that you are not willing to live with those problems as you have read that most folks with MG do need immune suppression and you are ready to go ahead and try that, knowing that you will have side effects.

The most likely choices you will have are prednisone or one of the two slower acting medications Imuran (azathioprine) or Cellcept (Mycophenolate Mofetil).

Prednisone works in a few months for most folks whereas the other two are more like many months to a year or so. Prednisone also has bothersome side effects. Sometimes cellcept and prednisone are both prescribed with the idea of initial response to prednisone and then tapering it as cellcept takes effect.

Going into immune suppression treatment is life changing. While it makes most of us do much better, and most of us have to do it as we can't get by on mestinon alone, it is a big step to take. It was easy for me, as my MG

Some folks do get by on just mestinon, so I suppose the doctor is trying to see if you can get by that way. That would be ideal, but as you say, it is not working acceptably.

So the next step is really yours. Make a list of what you can't do anymore, tell the neuro that you are not willing to live with those problems as you have read that most folks with MG do need immune suppression and you are ready to go ahead and try that, knowing that you will have side effects.

The most likely choices you will have are prednisone or one of the two slower acting medications Imuran (azathioprine) or Cellcept (Mycophenolate Mofetil).

Prednisone works in a few months for most folks whereas the other two are more like many months to a year or so. Prednisone also has bothersome side effects. Sometimes cellcept and prednisone are both prescribed with the idea of initial response to prednisone and then tapering it as cellcept takes effect.

Going into immune suppression treatment is life changing. While it makes most of us do much better, and most of us have to do it as we can't get by on mestinon alone, it is a big step to take. It was easy for me, as my MG got so bad very quickly and progressed rapidly so I had to do something fast. Prednisone was my choice (most of us start there) and it got me symptom free in about 4 months -- but the side effects were troublesome especially at the high doses we take to start with.

We need to be an active and pushy partner in our treatment plans for MG, clearly expressing our goals to our doctor (i.e. I want to be active again now rather than just getting by). And we need to persist with them, educate ourselves as much as we can, and never give up. There is the right treatment for each of us, although we may need some trial and error to find it.
Good Luck
Russ

Hi Specklove,
I am also new to Myasthenia Gravis, just found out the first week of December when taken to a trauma hospital. They say I have Systemic MG. I just joined the site today. I joined because there are no support groups in my whole area as I am in a very rural area. MG is such a mystery to me that I am trying to learn all that I can about MG.

I was put on Mestinon and had 5 Plasmapharesis treatments and remained for 5 weeks. Then Imuran was added in February as I needed something more. I am so much better than at first but still get discouraged. My doctor told me that 2 things I do would greatly influence how well I do with my MG. First was how well I handle stress. The second was my diet- how healthy I eat. Well, I don't do too well with the stress. And when I get upset or don't sleep well the Mg responds with extreme weakness. The diet I have been working hard on. I talked with a nutritionist who told me I need to eat "clean". That means lots of fresh organic fruits and vegetables, no processed foods, no preservatives, no food growth additives, etc. I get eggs and meat from farm- pastured chickens and animals. It is more trouble but has been worth it. Then she told me about patient that had MS and had started including Chia seeds in their diet and had tremendous success and suggested I might try it. So I have been on them almost 6 weeks and the results have been amazing.

I know we are not to tell people what to do or give medical or nutritional instructions. And I am not. So I am just telling you my experience and what has worked for me. After 2 weeks I could not believe the improvement. So I thought it must be the medicine has built up and is making the difference. So I went off the Chia seeds in my diet and in 3 days there was so much difference I could not wait to get back to eating the Chia seeds again. I have so much more energy, my general mood is better and so is my digestive system (I had so much trouble from the side effects of my meds.). Even my blood work is better. I know everyone on MG is different, they say like snowflakes. But I am so thankful that the MS patient told the doctor about their experience with Chia and that she told me. She thinks the Chia has made a big difference too and was surprised in my improved blood work last week.

I just had my 78th birthday 2 days ago. My doctor says I must be more patient because my age makes MG more difficult. I am unique to have gotten it at my age. I am wondering if there are other women who are older with MG.

Also sorry to hear about your experiences. I have a slightly different take from @Rhanson in as much as I see Mestinon as not doing anything to treat the cause of MG. It simply attempts to nullify the effect of it. The effect being muscle weakness with Mestinon giving more time for the damaged muscle junctions to work. If one is lucky enough to go into total remission and for whatever reason, the autoimmune system begins to behave itself and ceases to attack our muscle junctions then we are left with needing to overcome the residual damage and Mestinon is the tool of choice.

Many, most of us, don't go into total remission and need something to combat the immune system. Prednisone is usually the initial treatment simply because, in my experience, it is fast-acting. Like days, maybe weeks. However, it's not nice and in high doses potentially damaging. Once the MG is under control using both Mestinon and prednisone thought is usually directed to a long-term solution using Cellcept / Azathioprine but that can take up to a year to be effective.

I must admit that the first year can be hard and at times very unpleseant but, there is light at the end of the tunnel. Most of us really do go on to lead a near normal life. We might get overly tired at times and just a little lethargic, who doesn't!