I wish that more people would spend some time here after they have success in their treatments, including remission etc. A few do, and we like everyone in their uniqueness. Over the last year or so, I have seen people report their remissions and not to be seen again. Many people come through, and ask questions, get support etc, and that is it...never to be seen again. As I said, we love everyone, and we will take what we can get here. Love, knowledge, experience, and funny etc is what we have to share, with everyone. At least that is the way I feel.

For me personally, I plan on staying around for awhile, and still reporting in, even after a possible remission happens with or without drugs.

I look forward to hearing what anyone has to say in regards to your question here. I certainly have heard people over time describe as you are asking. Remission and then comes back. Sometimes up to 20 years later....I have never heard anyone report a remission time as short as six months. From what I have heard it is years. I am referring to mostly people off of drugs completely.

Peace,

TJ

I have a friend who had only a low level condition after a successful thymectomy. After a lot of heart serching, because of the possible dangers with MG, she got pregnant and promptly went into remission for twelve years. The symptoms came back then but no worst than before. This is such a strange condition nobody seems to be affected the same way as anybody else.

Hi! Great people here, in this support group! Many people, here? Will be able to give you - all kinds of perspective - about the answers you are looking for.
In recent weeks, we have had several discussions - on this very topic. Of course, people will answer you directly, on your topic posting, right here (as cgreens has done).

But while you are waiting for more postings, right here? Browse back through the topic postings, over the past several weeks.
That seems, like a lot to do? But I bet you would find a lot of material, that would interest you (material addressing your questions).

I apologize, for not answering you, more directly. I would be glad to do that, in the near future, if you wish.
But everybody's MG? And everybody's symptoms, and medical treatment? It's all - a little bit different, one from the other.
This is true for me, too. My symptoms are kinda different. Enough so? That answers, from me? Are not a good starting point - for someone new to the group.

But I highly encourage you - to stick with this group!
They have helped me tremendously, in only a few months!
You'll get good answers here! And if you need help, getting answers - outside this support group?
The people here - will point you - in the right direction!

I was diagnosed in 1993, had thymectomy in 1994, then slowly moved on to "remission" and no medication (Mestinon only very rarely, and then only one tablet would do me for a day). I have had a couple of flare ups since then, one in approx 2001, then another in approx 2006, lasting about 6 weeks each. Since then I have been very well, however I am now experiencing symptoms again. This time it is not like the past flare ups. Those were acute in nature and hit me hard, no crisis, but down for the count for the whole 6 weeks. This time, I am feeling more chronic, like when I was initially diagnosed. Fluctuating symptoms throughout the day, taking Mestinon regularly, with only an hour or two of relief until the next dosage. I live about 800 - 900 kilometres from a neurologist (none in the area), so I will be waiting until he makes a trip here to see him. I am hoping that my body is just really trying to fight off a flu virus or something, and it will pass, but it has now been a couple of months, so likely not. :(

TJ thanks for pointing that out...
I am getting better and I will always do my best to come here as I get better and better.
When I had my thymectomy and they said it may take a year or two to see improvement I was shocked. and when they said 8 months for cellcept my husband flipped
now 1 year later I am getting better and time heals
Ann

In addition to remission, I'd like to include people whose lifestyles are not being impaired by MG in any significant way. In other words, even if you have to take meds, but if you can do almost all the things you want to do, you are a success. I would love to be able to teach and coach again and would like to hear about people with MG who are leading lives they as they desire. Unfortnately, as TJ said, for most people, once they're better, they're gone.

Marvin

The MG Foundation in my area had people who were in Law School and whatever who talked with us. They seemed to have contact and be people who are more active than those of us who are home alot. Maybe your local Foundation would have contacts for you. I felt bad when I went to the support group because they were so much better than I and I didn't like hearing some of their horror stories either. It was a bad combination for me at the time. Maybe you will get positive support or should I say support for your situation there too.
Ann

LBC - I realize just how curious you are right now to have answers to your questions about this disease we all share. The instant question, though, won't give you an answer to the real question I suspect lurks behind the one you're asking: "how likely am I to see remission?"

The group here are mostly suffering with MG symptoms currently, from mild to wild. The folks you typically won't find here are those who are either asymptomatic as the result of drug therapy or who have actually gone into remission.

The answer to what I think is your real question is that about a third of MG victims go into remission, another third get better or stay the same and the remaining third get worse.

These are impersonal percentages, but they are what they are. I think - and this goes for all of us - it's better to stay in the now rather than to project into the future. We have the best medical technology capitalism can buy. If you avail yourself to the drugs and treatments, you will get better. You also have to believe you will get better. Mental attitude is so important here. Questions like this - or the answers you're likely to get here - are the stuff of unnecessary sleepless nights. Better to spend your nickels on positive thoughts and good drugs!

Curt

LBC,

If your question is about likely outcomes, the studies I have seen suggest a position a little more optimistic than Curts experiences but only just. About half of patients get to the stage of remission or minimal manifestations (by which I think they mean that there are symptoms there but so mild they dont matter).

So you always need to think positively but prepare for the worst because you have to keep yourself safe.

I have no symptoms at present. When I was diagnosed I started steroids striaght away. I continued to get worst for a month, stayed about the same for a month and them got slowely better for a month until now my symptoms are gone.

My neurologist classes this as remission but I don't becase I am still on the steroids to maintain it. Statistically patients have a 10% or so chance of getting off all drugs and remaining in remission but the rest need at least one med to keep going.

My neuro is making me taper the steroid . It is like taking my security blanket away and, although I know he is correct to try to avoid side effects, I am still in a bit of a panic.

Like Curt said, avail yourself of the treatments offered you if you want to maximize your chance of remission and good luck.

Oh, what I would give to trade places with you, Gwyn!!! You are truly among the lucky ones. After nearly seven years, while I am relatively free of symptoms, they are always simmering beneath the surface, under a very thin blanket maintained by prednisone and Imuran.

Curt

Hi LBC - Welcome to the group! There are some amazing people here, and I'm glad you found it early on and hopefully it will provide you with much needed support. :)

I can't really speak to remission, as I'm not there and honestly don't know that I ever will be (and I really don't know that it's a goal of mine). But, I do lead a very full and active life - I work full time in a high stress job (though it is a desk job which helps tremendously); had worked my way up to running / walking a mile in about 11 and a half minutes (though I haven't been exercising regularly lately due to my schedule so I can't do that right now); swing dancing; shopping; cooking; volunteering; etc. I do have generalized MG, and take Mestinon, prednisone, Imuran, and have done IVIg a number of times. The MG is always there, and I can tell when it's time to take some more Mestinon, but ..... I don't have much of a choice other than to deal with it and live.

Curt is right that you should focus on the here and now, not what may - or may not- happen in the future. (I know, that's TOUGH!!!!) But you can't do anything about the future, just today. I guess that's why my goal isn't to reach remission (either complete remission with no drugs, or medical remission, with treatment but no mestinon). Try to take it one day at a time, and do what you can, now.

hope that helps some....

I'm pretty sure I went into spontaneous remission during my first pregnancy, about 10 years ago. The symptoms then were not very severe, rapid changes in my vision (street signs became blurry overnight) some generalized weakness, facial weakness. I had only been having the symptoms for about 6 months before they just went away during the pregnancy. Craziness.

Two months ago my neuro would probably have been counting me on the success column. Today he would put me in the questionable column.
I don't know how severe your symptoms are but I would recommend you prepare for a roller coaster. I have had times in the last 5 years where I thought I might be able to come off all meds. I mean, who wants to compromise their immune system with Celcept for the rest of their lives? But I now know that when my body dips it seems to not stop until I hit rock bottom. We are now in the process of contemplating more regular IVIG treatments.
We had one lady come to the local support group who had been in remission (after thymectomy) for 15 years so I know the successes happen. But after the last two months my normal optimism seems to have gone on vacation but I'm better than I was a week ago so what am I complaining about? Lol

HI,
Just found this group while I was looking up Vit d and MG.My PCP
just started me on Vit D and CA because of low D level.
Any how,I was dx in Nov 2007 and was put on Mestinon and had a Thymoma removed April 2008.That would have been sooner but had a cardiac problem in the interim.
I had a 6 month symptom free period in 2009 and was off the Mestinon totally.But that winter had swallowing and speech problems and went back on the Mestinon'. Was able again to decrease doses and just use as needed and again stop taking it.
Have now been symptom free for 9 months and not on Mestinon BUT carry it everywhere.I know if my eye starts drooping to get right back on the Mestinon. I prefer to call these symptom free periods since I know the MG is still lurking around.But it is nice to
have these little vacation periods where you almost forget you have it and can hop in the car and drive without sitting around waiting for the Mestinon to work.