[Meagan214]

Hi everyone, my name is Meagan, I'm 21, and just got diagnosed with MG two days ago. About over 2 weeks ago i saw a neurologist for a droppy eyelid and hard time chewing hard objects, and he had a high suspicion that i have MG. So we did blood work and got a CT scan done on my chest to check for a thymoma and got my results back two days ago and found out that I tested positive for MG and have a 3.7 cm thymoma in my thymus and need surgery soon (most likely transsternal). Im currently on predisone for hives from an allergic reaction but not taking anything now for MG, even tho i have occasions where it is hard to chew and weakness in my arms and hands and talking at times is hard.
I went from being a normal college girl (also an athlete and play softball at my university) to someone with a chronic rare autoimmune disease. It is kind of hard to wrap my mind around all of this and how things are gonna have to change like take a leave of absence from school and redshirt this year for playing softball... and really looking for advice on how you guys cope with this disease mentally and physically? I am very nervous for this surgery which will be most likely within a month and how the recovery process will be like and would like advice on what to expect post op pain and maybe future medication that I might have to take? Honestly I am vey scared for what lies ahead
I am here for support from you all and would love any advice that would help all me, PS i love reading about your experiences as well it makes me feel like I'm not alone

Thank you for reading this! - Meagan

[Bebo]

Hi Meagan,

I am also diagnosed for MG 2 days ago ..but my CT on thymus gland is showing no problem (for now)..Unfourtently I can not help alot with it, I hope other can do.. I am on mestenon now..my neurologist told me there no problem to do some sport as long as you can, but better to do it at home where someone is around and know about ur case..But one of the most important things that I learned is MG cases vary greatly from person to person, so its preferred to ask your doctor about ur concerns.

[juliejayne]

Hi Meagan,

Yes it is scary, but you are not alone, and here and on various MG facebook sites there are many people who have been through similar experiences and are always willing to offer support or advice, or just virtual hugs.

On the positive side, if they remove the thymoma, there is a chance that you will be much better. This surgery works best on the younger people. At my age they probably wouldn't even consider it. So stay positive, rest, and if you have any worries or questions, please ask, someone will be able to help.

JJ

[drpdhmr]

I was diagnosed in 2012 and had a 2.5 cm thymoma that was found about a year later. I opted for the VATS thymectomy that only required 4 incisions. From what I read the trans surgery isn't more effective; just takes longer to recover from.

The good news is MG is controllable in most cases, but expect it to take a while to figure out which meds work best for you and at what dosages. In my case I started with just Mestinon and then got worse so had to start Prednisone and IVIg on occasion as needed.

I'm now working on tapering off Prednisone and taking Imuran. I've had some good runs (went over a year on just Prednisione) and some back times as well that required hospitalization.

MG is a journey that never ends, unless some day they find a cure. Find a great neurologist and expect some ups-and-downs in the beginning, but know that it will get better.

[AMTrenchik]

Hi Meagan,
I was diagnosed 22 years ago. I can only imagine that you are a bit overwhelmed right now. In my case it took over 9 month to get a diagnosis, so it was almost a relief for me to know what was wrong.

I just wanted to let you know that a "normal" life is perfectly possible for you, with a few adjustments.

I have been married for 35 years. It took some time and effort for us to adjust to my limitations, but I believe it can bring a couple closer together.

I had 3 young children when I was diagnosed. Since that time, I have given birth to another child. That pregnancy was more taxing than the others and I had an exacerbation during the 36 hours of labor. But on the bright side, I soon after went into a remission that lasted as long as I was breast feeding.

I believe that my children are stronger and more caring adults for having had a mom with a chronic illness. They learned learned the importance of personal responsibility and inner strength as they saw me push through the rough days. They learned how to give help lovingly and the importance of accepting help graciously.

Most importantly, they learned to be thankful for every healthy day they are given. My motto since my diagnosis is, "Dance every day that you can."

There are so many more resources available today, than there were in 1992 and the internet is a wonderful source for information and support.

I will keep you in my thoughts.

[juliejayne]

AMTrenchik, drpdhmr, please use caution.

I just wanted to let you know that a "normal" life is perfectly possible for you, with a few adjustments.

This is true for SOME, but not for all. Whilst many, many more people with MG can live a reasonable life, than was true 20 years ago, suggesting that this is true for everyone is dangerous and demeans the struggle that others suffer.

MG CAN still be fatal. It should NEVER be taken lightly.