[pickingupthepieces]

Hi Everyone--I am a newbie here but have been reading for well over a month now. I want to say how much I admire everyone's tenacity as you live with this horrible, insidious disease. I offer encouragement and support to you as you deal with MG every minute of every day. I did not know much about MG until my sweet, very healthy-up-to-that-point mother was diagnosed Dec. 30. Can you imagine getting this diagnosis at age 92 1/2???? She noticed a problem with her vision while driving in Sept. and promptly went to her Opthamologist. She KNEW something was just not right and he sent her for an MRI, which showed nothing. He told her to rest her eye, keep it closed or wear a patch and return to him in 6 weeks. My mom lived 10 hours away from me---I kick myself now for not going up there to delve into this further because, at the time, I didn't think it sounded right. When she returned to him in Nov., he just said she had double vision but did no further tests, did not send her to a neuro, etc. She was an hour away from DUKE!!! But...not knowing details, I just thought I would take her to my Opth. in Dec. when she would be visiting my family for the holidays. She called me on Dec. 8 saying she could not manipulate anything with her hands...she didn't know what was going on, thought she may have had a stroke...and even thought she might have ALS. She was diagnosed with a mini stroke by her family doctor who did not refer her to a neuro. I got her to my house where she saw a neuro at the University Med. center and was positively diagnosed with MG. Her symptoms were classic and VERY severe. Drooping eyes, unable to wash face, brush teeth, feed herself at times. The mestinon, initially, was like a miracle drug because her symptoms quickly abated. However, she was unable to conquer swallowing problems--even with IVIG and a stint in the Neuro ICU. The mucus was unbelievable and her O2 sats not good. She died peacefully (right before her planned plasmapheresis) the end of Jan. surrounded by her loved ones. It was such a difficult time and was heart breaking to see someone so spunky, so alive struggle with the simple task of eating. She spent more time in the hospital in that last month--3 weeks, with just 1 week at home on O2--than all total in her entire life. She had lived a fantastic life--a great one--and said if it was her time to go, she was ready. My dad died 15 1/2 years ago and she was ready to be reunited with him. In those last 2 weeks, every one of her 11 grandchildren came from all over the country to be with her. It was amazing. I don't want this to be a DOWNER...but I just had to jump in here after reading all your posts and "getting to know" some of you through this. You are all so knowledgeable and educated about your disease and I commend you. I was just on the front end of that process when her battle became a major crisis. I read what I could but didn't find this forum until it was all over. I still have an avid interest in learning all I can about this disease. Time was just not on my mom's side and her age was a mitigating factor in the whole picture. I thank you for letting me vent and may jump in with a question or comment here or there, if that is okay. I am still in the grieving process and, somehow, it just helps to share a tiny bit of her story with people who understand and experience this awful disease. You are all so much younger than she---and that is a huge advantage. You are in my thoughts and prayers as I read your posts and imagine your challenges and struggles. As I sit here in tears, I can honestly say I hate this disease and the speed in which it overtook my precious mom's body. She hated it too---she hated her dependence on me and others, for she had always be so INdependent and such a strong person. Her exercise regimen, even at her age, put us all to shame. She did 2400 total reps per day, taking 1 hour 20 minutes to complete EVERY day until MG. Even then, after her diagnosis, she would exercise her arms and legs when she was able. I am so sorry for this rambling. I want to be an encourager to all of you---hang in there, you CAN do it, educate yourselves and support each other. Thanks for letting me have this moment.

[rach73]

Dear Pickingup the pieces,

I am so sorry to hear of your mothers passing. It must be very hard for you, not only coming to terms with her passing but trying to understand the disease she was suffering with.

Your mothers diagnosis must have come as a shock to all of you. You were probably very much like the rest of us in that you had never heard of MG, until a consultant uttered those words.

Thank you for sharing your story with us and welcome to the forum.

I think I would be right in saying that it doesn't matter how long you've been ill, you still learn stuff about this disease all the time.

The forum is great as you can ask loads of questions and someone will be able to relate to your experience or have the knowledge to help you. So please feel free to ask away!

If there's anything I can ever do to help you, I will.

Much love
Rach

[jana]

Oh, pickingupthepieces, I am sooooooo sorry for your loss!! You know, they say that MG is no longer a terminal disorder -- but, we all know that this isn't always true. I'm so sorry that you learned this first-hand. It is such a "rare bird" that docs seem to think that our symptoms come from anything BUT MG. Your mom was really quite fortunate to receive a diagnosis as quickly as she did -- although, I know that in her case, it simply wasn't soon enough.

We're proud to have you here -- lurking OR commenting OR asking questions. Do whatever brings you peace and/or comfort. You are now a member of OUR family.

(((HUGS)))

[Shari_W]

pickingupthepieces
I felt the sincerity in your post and it brought tears to my eyes. I understand from both perspectives. I have lived with MG for 16 years now and I lost my mother to cancer 10 years ago. Please accept my condolences on the loss of your mother. It is sooo devastating to lose a loved one, especially your mother. My mother was with me every step of the way when I was first diagnosed with MG and I miss her so much. You do have the memories and love of your mother with you for the rest of your life. Her spirit will continue to be with you as well.

I am sorry that your family was hit with MG in the manner that you were and my prayers are with you and yours during this difficult time.

Please feel free to post and comment whenever you like. You are now part of our MG family and we need people like you to bring awareness to this disease. Do whatever you can in the memory of your Mom. I'm sure she is smiling down on you at this very moment.

Blessings,
Shari

[pickingupthepieces]

Oh, thank you so much to all of you for your kind words. They bring comfort and solace to me on a very dreary, rough day.

Believe it or not, I HAD heard of MG! When I heard those words, my memory bank pulled up Aristotle Onassis, as I remembered his diagnosis MANY years ago! But, truly, that was the extent of it...I just knew that it involved muscle weakness. Oh, how I have learned so much more. I have two older siblings, one of whom is a retired physician--he had to really think back to his med school days at UNC, along with a lot of research, in order to be up to speed in our talks with the medical teams. I must say all the physicians involved here were wonderful and I feel like she received excellent care. However, the doctors here had never diagnosed anyone my mother's age and there were so many variables involved, as you well know...kidneys, heart being the major ones, simply because of her age.

Are any of you involved with the Myasthenia Gravis Foundation of America? Just wondering as I start to think about ways to turn this into something of benefit to the MG community.

It is so good to know that I have a "family" here and I so appreciate you welcoming me.

[pickingupthepieces]

Rach, Jana and Shari, thank you SO much for your kind words. It is so nice to know that I have a place here and I appreciate you welcoming me. Your words bring comfort and solace on a dreary, rough day.

Believe it or not, I HAD heard of MG! When I first heard those words uttered, I reached back in my memory bank and remembered Aristotle Onassis from YEARS ago being diagnosed with MG. The extent of my knowledge was very limited...I only knew that it involved muscle weakness. I had never heard of acetylcholine or Mestinon and was only vaguely familiar with the neuromuscular junction. One of my 2 older siblings is a retired physician and recalled only a cursory study from his days spent at med school at UNC. We both did quite a bit of research to be prepared to ask intelligent questions in our meeting with the medical teams. I have to say that her doctors were wonderful and she received excellent care.

Are any of you involved with the MG Foundation of America? I was just wondering as I am beginning to find ways to turn this into something of benefit. My parents left a wonderful legacy centered on God, family and love and I would like to continue that in a positive way to help others traumatized by this devestating disease.

Thank you again for caring...and thank you for your prayers. We could not have gotten through any of this without the prayers of His people. They mean so much and carry me through. In fact, as I read the posts here, I pray for each person as they go through their day. Hugs and love to you!

[Kathie Glenn]

I am so sorry this happened to your beloved mother. Why is it that as we get older the medical profession overlooks so many diseases and chalks it up to age? My mother is 90 and this has happened to her as well. Where did your mother live? Mine lives in Winston-Salem, NC. You mentioned she lived close to Duke? There are chances she had MG for many years in a very mild form. I had a friend who died of cancer last year and never knew he had MG until the later stages of cancer. Couldn't swallow, the whole bit. We are misdiagnosed so many times. When mine first started, my eye dr. told me it was my fibromyalgia and weak eye muscles causing my double vision. Wrong!

My thoughts and prayers are with you. Kathie Glenn

[pickingupthepieces]

Originally Posted by Kathie Glenn

I am so sorry this happened to your beloved mother. Why is it that as we get older the medical profession overlooks so many diseases and chalks it up to age? My mother is 90 and this has happened to her as well. Where did your mother live? Mine lives in Winston-Salem, NC. You mentioned she lived close to Duke? There are chances she had MG for many years in a very mild form. I had a friend who died of cancer last year and never knew he had MG until the later stages of cancer. Couldn't swallow, the whole bit. We are misdiagnosed so many times. When mine first started, my eye dr. told me it was my fibromyalgia and weak eye muscles causing my double vision. Wrong!

My thoughts and prayers are with you. Kathie Glenn

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....

[Kathie Glenn]

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.

[pickingupthepieces]

Originally Posted by Kathie Glenn

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