We tend to go off radar it seems as our lives getter easier or we adjust to our new normal I know I forgot how scary the smallest things were in the early stages. After finally finding what works or didn't work. Life is not what I thought 60 plus yrs would be but I still do what I can when I can ,I refuse to not go vacation but I do easier side and watch family vs do. We still have company but dinner is simpler, house isnt super clean ,paper plates are not a sin when I'm tired and 20 people are eating. Everyone is so different but I know lots of people get on with or back to life. I'm sure age is a factor when we start mg mentally and physically. Good luck where ever you are in this journey. Have a good week everyone!!

I had MG bad for a year (2012) then have been in full med free remission for nearly 3 years. The majority of folks who post here come when new, struggle their first year, and then most seem to figure out treatment that works and disappear as they no longer need support.

My neuro, who treats many MG folks says that the first year is the hardest, and then most of her patients get a treatment plan figured out that works for them and do go on to lead pretty much normal lives, although it depends on the co-existing conditions that can complicate things.
Good Luck.

Thx for the replies, it's encouraging to see a clearer plate further down the trail! Thk God for modern medicine! ... and support groups!

Oh yes we are here. We read and chim in.
I was diagnosed 4 1/2 years ago.
At first in hospital and on ventilator. Glad to have survived.
A year nearly in bed and now 4 years later appear pretty normal.
I have to manage my life but can baby sit my grand kids and swim exercise. Medications and treatment and much rest got me here. grateful to be able to live again. I am 62 and retired.

I was dx 3 .5 years ago. Ivig has been the most awesome treatment for me. I find that what I eat effects how I feel. Last night I wanted pancakes, and even though they were gluten free (I used regular syrup), symptoms started creeping back. So, today, I must eat all healthy, high protein, veggies, no sugar, no dairy etc. Also, I can tell if I don't drink enough water. It's really getting to know your body, and learning how it responds to certain foods or activities. I am learning to rest before I overdo it. I recently had to take a trip 15 hours by car (one way). I tried to keep my same schedule (important for me). I didn't have to drive, so I could rest while we were on the road. Adjusting the seat by tilting it and the back regularly really helped me not to wear out so quick. Even though I took healthy foods along, it's so easy to eat the wrong foods. I enjoy working a full time job, however I did have to change offices twice to lower my stress. I hope you get to enjoy a good game of golf soon!

It is important to remember that every MG patient's journey is different. Lots of well meaning advice is given about the tips and tricks that work for them. In the end, you must be the captain of your health, and together with your Neurologist, work out a treatment plan that makes sense for you. For most MGers, once the underlying autoimmune response is brought under control, through a healthy lifestyle, a positive attitude, adequate rest, and drug therapy, you can expect to live a nearly normal life. Learn your own unique limitations, listen to your body, and stay connected to your support system.

Greatly appreciate all the replies here ... thx for sharing your experience and hard won wisdom. I'd greatly appreciate more learning on that topic we mention least ... the "breathing incidents". Is this something that happens once we're stabilized on our new medications and treatment regimen? I'm trying to learn if there is any way to anticipate or be ahead of such incidents .. try and make them less of an unexpected emergency/health threat. At least, get into emerg before it becomes critical. I had asthma many years ago so I'm familiar with the challenge of such incidents but sounds like the MG ones are far more serious, life threatening even. (I've now got a medical bracelet).

I've never had crisis breathing only short of breath stairs occ. You should keep list of meds,allerg,medical problems, drs names in wallet and family or friends wallets,I never even walked dog around block without putting refrigerator copy in pocket. Also everyone should ICE as contact cellphone put ice then name er contact and # 911 responders are trained to look there this is something even well people should do .do it tonite please everyone!!! My son is paramedic and is sad when they cannot find patients name etc . You life may depend on it!!! Take care

When I got this disease I met some people who had MG for years. They had some advice I did not expect. Swimming is not for us ("That's how we die!" my friend said. Sure enough, I had a few scary moments in the pool when my legs cramped up, and if I was in the open ocean I would be dead. So, no ocean or lake swimming.) Also, many MGers fall down and get injured that way. You need to get handrail in the shower -- saved my life a few times. Also on the stairs. Never get in a hot tub or a sauna. The most important thing is to not work yourself to death. Relax! ~joe

I had my crisis in the beginning. We tend to have crisis when we have just been diagnosed and aren't sure yet of how it effects us.also treatment hasn't been inplimented for long enough yet.
I just didn't get help fast enough. Mg is so different because we don't get better if going down hill .....we get worse. That is so different from our illnesses where we just buck through and get better.
I do carry an inhaler because I have had to go to hospital since treatment for asthma attack due to allergies.
Allergies effect me more now..

ICE?? Sorry, I don't understand this Xmas .. can u explain further??

Yes enter ICE as newperson on cell phone contact info fill in name and #for ers I have 3 people listed under 3 diff ICE selections ICE then name then #then ICE my son's info then ICE my daughters info hubby is 1st. Hope this helps make sure ice people have vital medical information written in wallet just in case. Er responders know how to quickly find this info and now you do to .i found a lady down on sidewalk,confused called 911 and found cell phone for them but no ICE in it!!! No much in wallet either to find family if I goofed up explanation just ask any error person you go by if they don't know perhaps you can teach

ICE = In Case of Emergency.

If you have a crisis, you may not be able to effectively communicate, or talk. In your cellphone, under contacts, list all of your important family and friends that you would want notified in case of an emergency.

ie. ICE- Wife (123) 456-7890 , or ICE - Neuro (123) 456-7890.

Xmas is right, most medical professionals (paramedics, nurses, physicians, police) know to look under ICE if they find someone's cellphone who is unable to communicate on their own for whatever reason.

Take Care ! Chris.

Thanks Chris. What can I say sometimes my brain works as crappy as my mouth does. Also new/old pts keep a log even if it's only a general week by week for Dr visits. I found I minimized symptoms or felt good after sitting in office for 1 hr or so. He's only 1 of 3 neuro-opaths in my area and I love him even if I have to wait!!

Welcome to the group! Sorry that the membership criteria sucks. Unfortunately, I was diagnosed in 2012 and still am having a hard time finding treatment that works. I have a great Neuro but nothing has worked so far. I'm doing Rituxin infusions and on cellcept but by no means do I feel good. I do think it has helped cause I've been under a ton of stress from every aspect of my life and I'm surviving. Just keep the faith and things will work out. We all are so different but at least we have each other!