Newly Diagnosed

Glad to be a part of the MG group and hope to gain much information, or help others in some way.

I've been passed from doctor to doctor over the last 12 years or so, but journey really started about 20 years ago. You know...symptoms but no clarity? I'm sure many have been down the exact same road I've travelled.

After losing my voice, and eye and face started drooping.....someone figured it out. Great....at least I'm on the Mestinon now....4 x daily. And if I miss one pill.....people start looking at me funny...because my face is all twisted.....and then the voice goes.

Neurologist in currently talking with rheumatologist about new treatments.....probably plasm exchange...but will know soon.

I'm 54, almost 55...yikes. Been divorced for 18 years now and have two grown children. I do counseling/life coaching over the computer, I'm a writer and artist.....lucky to have lots of things to do at home.....my favorite place to be as I'm sure many of you feel the same.

Anyway...look forward to meeting people in the group.

Cindylee

Welcome! Your journey to diagnosis for MG sounds all too familiar. Some folks' eye doctors or GP's pick up on it first. It sounds like the Mestinon is just keeping your head above water.(?)

If you don't mind me asking, how did the diagnostics and physical tests turn out? I wish you didn't need the plasma exchange but you have to do whatever it is that sustains you with MG. It's such an unpredictable disease.

I was diagnosed in 1999 and a thymectomy was performed in 2000. As I have Systemic Lupus, along with Mestinon I take Imuran and methylprednisolone, among many medications. (I am post-ablative hypothyroid for autoimmune Graves' disease).

I am 52, 3 grown children and celebrated my 16th wedding anniversary today. I also have two cats who tend to remind me daily what taking care of toddlers was like on a daily basis.

It's good to have you with us, Cindylee. The more the merrier!

Lynne

Diagnostics? Lets see. Two positive eeg's, single fiber,and Mestinon....plus my symptoms were fullblown. Eye and facedrooping, loss of voice, and inability to hold my head up. When given the Mestinon.....all of my symptoms were immediately reversed......after first pill. It was amazing. I'm now on 4xdaily....and waiting until after gall bladder surgery next thursday to start my MG treatment. Not a whole lot to look forward to....but with infection in my GB....they are hoping at least I will feel better. Might not make all my stuff go away...but hey....I can deal with most anything if I don't feel like I have the flu everyday of my life.

My CT scan of thymus was normal...so they didn't want to go that route....at least not right now. How are you doing with the meds you're taking? I hope well. Honestly, it feels really good to share with someone else who has MG. You're the first. You are right....such a bizzare disease.....leave it to me to pick one that is rare and not many people have a clue about......even doctors if you can believe that. Or they might have heard of it...but never had a patient that had it.

Anyway....thanks for your email. It was honestly quite comforting....especially since you are my age with 2 grown children like me.....and I love cats. I've been divorced for 17 years....yes..you've got it right....undiagnosed MG was a part of the downfall unfortunately. I pray that your husband is more compassionate. I don't have my cat right now because of my most recent move...but will soon I hope.

Look forward to talking with you again Lynn....have a good one.

Cindylee

My meds (and docs) have kept me on my feet and (knock on wood) free from an MG crisis, thank God.

Wishing you the very best for a speedy recovery (read: faster than a snail but not as slow as a turtle).

Have a good trip....and actually my surgery is on friday instead of thursday. I'm sure I won't be on here over the weekend....but hopefully we can reconnect next week.

Thanks for making me feel welcomed in the group.

Cindy

Take care.

How are you doing? How was your trip?

Cindy