Kathie--Thanks so much for your comments. My mom lived in little ole Goldsboro...not THE center for neuro, I'm afraid. You are right, her MD chalked it up to age and a mild stroke--go home, talk a lot to help the slurred speech improve, exercise, etc. Infuriating! I am sure you are right, that she had had it for a good while, unnoticed. Just 4 years ago, she was riding a camel in the Holy Land and then riding a sea-doo with us at the lake. She was remarkable.

I can totally understand what you are saying regarding your mother and then your friend who was diagnosed with MG in the late stages of cancer--that is awful! I hope your mother has someone close to her who can go to doctor's visits with her. We all need an advocate, don't we?

It is disconcerting to read here and see how LONG it has taken some people to get a diagnosis...unbelievable! I read of one person where it took 7 years!!

Are you in NC? How long have you been diagnosed? My prayers are with YOU, dear one. MG is certainly a tough...tough disease. I know you value your good days! Hugs and prayers to you....Babs

OH--to ALL. SO sorry about my double posts above! I thought I had lost the first one, so I re-wrote. Now you've got two versions of the same thing! LOL. Some days I'm more ditzy than others!

I do have one question. Do any of you with MG have other family members with it as well? My mother and I were very similar and both suffer(ed) from psoriatic arthritis (auto-immune right there!). I told my husband when Mom was going through all this, that I had this feeling, this fear that I would end up w/MG one day. THEN...a few nights later, my brother had a dream that another family member was diagnosed. I am sure these are just thoughts/fears, etc. from the shock and trauma of this quick ordeal. But...just wondering about genetics and MG. Going to check it out....

Babs: I grew up in Winston-Salem but have been in Columbia, SC since 1989. My husband has relatives in Goldsboro. Good BBQ! We had our family reunion there in 2007. Nice city. We visited the little park and took our grandchildren on the old train ride. Anyway, I was DX 2/09 with Ocular MG. My mother has Temporal Arteritis and had for many years. The symptoms are similar to Ocular MG. In fact, I wonder if I should be tested for TA. My mother and I are very similar as well. She had it - I'll get it. I would like to learn more about the genetics of MG. I have wondered if mother might have MG as well, but she did test positive for TA, so probably not. Where do you live now, Babs? Would love to keep in touch through the website. Have a good afternoon. Keep smiling.

Kathie-I live in Birmingham and passed through Columbia a few weeks ago going to/from Goldsboro. We were there to get the house ready to put on the market...and, yes, my little childhood town does have THE best BBQ. In fact, I have about 7 lbs. in my freezer right now! We lived a few blocks from the park so I spent many hours playing there over the years---my dad was in Kiwanis for years and worked the train many Sundays in the summers. Who knows, I may know your husband's relatives (although I have been gone so long but I do still have a lot of connections there). I went to Meredith for 2 years, then transferred to Bama...and one of my suitemates was from Winston..lots of girls from there, in fact. I'd love to keep in touch too!

In Joy-Babs

Babs,
Thank you for sharing your story. It certainly brought tears to my eyes. Many hugs to you and your familiy on the loss of your mother.

I haven't posted much yet and MG is very new to me, although the neuro ophthalmologist first mentioned it 7 years ago. I now have a tentative diagnosis of MG and have been on Mestinon for less than a month.

I don't know what the future holds, but I do know what a difference it makes to be able to come to this support board.

Cate

Cate, thank you so much. I am so sorry about your diagnosis and do hope you are seeing some changes since you've started Mestinon. This board is a great place to come for encouragement, support and education, isn't it? It seems that so much of this is trial and error when it comes to medication...and the patient has to be SUPER pro-active in their care. I know you will learn a lot with all the knowledgable and experienced people here.

Sue, I understand that hate/hate relationship re MG. I detest it. Those life lessons are so tough... but I know you will learn and grow and be able to help others through this. How long have you had MG? I laughed when you mentioned patience and acceptance. One time I was in a Bible study where someone asked us to pray for her to have patience....we all gasped in shock! She looked puzzled and we told her "Don't EVER ask for patience, because then yours will surely be tested and that's NOT good!" It was pretty funny. Pray for patience...and hurry up! Right?

The memories of my mother---and my dad!---are so precious to me and I cherish them so much. She was a trooper, too, even after her diagnosis. She never complained---and never once shed a tear for herself. She was brave to the very end. We had some incredible moments with her in the days before she died. We sang, we spent time with her and she shared an incredible dream or vision which provided peace, assurance and hope to all of us. Her life touched so many and we will ever forget those moments with her...they were life changing.

Thanks, again, to both of you for making me feel so welcome. This is a safe place---a good place to come when you need it.

Hugs and Joy-Babs

Pickingupthepieces - Welcome!!

I am very sorry for your loss. While each of us has our own grieving process that must be endured - the happy memories are what get us through. Your mother sounds like she was very active and able to enjoy life to the max - before getting MG.

I'm glad you found this group and hope you will continue to visit and share. Like others here, I'm still learning about this constant companion called MG. I have a hate/hate relationship with it - and even so, it stays. And I continue to try to figure which of life's lessons I'm supposed to be learning from it. (Probably things like patience and acceptance, so I imagine I'll be at this awhile!)

Again - welcome, Babs

Sue