So frustrating in that we are on our second MG "specialist" and we are in a "good" area. I get the feeling that the majority use the same treatments across the board and while, they may work for the male over 50, they do not for the young female. I think I\'ll post a question about locating a good doc. Thanks. Sarah

To Sarah,
BreezieLynne saw the pediatric neurologist today. He told us the first course of action for her to take is the thymectomy. He said this will NOT cure the disease, but will keep it from progressing and hopefully put it into remission. He said she will always have to take the Mestinon until it doesnt work for her anymore but until then.......Now we have to see a surgeon about the operation. We should know something more in the net 2 weeks. He wants the operation done as soon as possible. Thank you all for all your prayers !!!! Tammy

Tammy--we were told the same thing about the thymectomy and Natalie did well with and following surgery. Please know that you both are in our thoughts and prayers! Stay in touch! MG is truly a "family" disease!
Warm regards,
mamasandy

NanaMar....Thank you for posting your note. I think Natalie\'s thymectomy was delayed for 6-9 months to determine for sure if the MG would generalize. She was just 18, and just about 1 year out with the dx so we are hopeful at some point it will help. Natalie also has been socially isolated is is now on celexa that has helped with the mood swings from the prednsione. She has even named her moods Tom and Norma to bring some humor to the situation the best you can.

One question? It sounds like Mary Michele has had a tough time of it. Did she ever do the Social Security disability application and if she did how did that go? Does she qualify for title 19 or other state insurance? If Natalie loses dad\'s insurance, I am not sure how we would pay for IVG if it comes to that.

Thanks! Hope you have a good day!
Sandy

PS...maybe we should start a Merry Mom\'s of MG group! ( we cannot lose our sense of humor!)

So glad for the other moms! To big Mama- Again, sounds just like my daughter. I would try to find surgeon who will attempt to go in thru her side rather than starting with open chest. My 72 year old father has the scar from heart surgery and he won\'t go swimming or take off his shirt in front of others. I did research and, apparently, there is no good plastic surgery "fix" because of the depth of the incision. If your surgeon needs a consult, we used Dr. Diana Farmer who is the chief pediatric surgeon at UCSF. (It\'s a teaching hospital and my daughter\'s surgery was observed by about 15 other surgeons so I know the doctor is happy to "share".) Good luck. Sarah

Well.....Bri went to have her CT on Friday after seeing the pediatric neurologist. The films and all her lab results were faxed to the pediatric surgeon the neurologist recommeneded. It has been over a week and we are still waiting to hear from the surgeon. So no news yet. However, the CT showed there were no masses or anything like that and only a residual thrymus gland. To me, and I am no dotor.....this means small or getting smaller. I thought the thymus was enlarged to perform a thymectomy. I am soooooo confused !!!!!

My daughter's thymus was no bigger than normal but when they removed it, it weighted 2 1/2 times more than it was supposed to. I have read that 19 out of 20 thymus glands in MG patients will be "pathologically abnormal" upon removal. Just FYI- My daughter saw her Stanford doc this week and he now, finally, agrees that her MG is "active" (which I had been telling him all year). Ironically, she has had some relief from her fatigue since increasing her mestinon to 90mg 3x/day. We are going to try 4x/day to see if it hurts or helps. Thanks for the update. Sarah

Hello ladies!....Natalie's CT scan of thymus was also within normal limits and the path report did indicate hyperplasia which indicates something funky going on with it. All of her antibodies in blood work have also been neg...her neuro says that the antibiody that she has the test has not been developed yet...I do know the MUSK test has only been around about 5-6 years.....Bimama Tam Tam...hang in there...it is a tricky disease.......and is complicated by the fact it is rare....To Sarah 100.....I feel your frustration!! We keep telling our local neuro that Natalie was worse and while not being a bad man or doc, his experience is just limited......the Mestinon did help Natalie for a while, so there was some feeling of normalacy .....it is hard for adults to deal with a chronic disease, let alone these young ladies....I have been accused of "moddlecoddling" Natalie,...people can be so rude and do not want to realize that this is very flucating disorder and adds a TOTAL different dimension on life!! While I consider us liberal in our views,....we have worked much harder at utilizing empathy for others, Natalie does not need or want sympathy,....but would appreciate a " Can I do anything" from a friend....She knows no one can really do anything, but just to acknowledge that a lot of things are much harder for her would be appreciated.....I am glad that I found this site to be able to express these thoughts and KNOW that you do KNOW !! Hope you have a peaceful day! Stay in touch please!
Sandy

MamaSandy- It's very hard to know the difference between what my daughter is incapable of doing versus what she just doesn't want to do. She was so independent "before"- did her own laundry, cleaned her own room (ok- not very well), was never home. Since she got sick, I stepped back in to do all those things and our daughter always wants to be in the same room as my husband and me (even if she's crabby). She keeps talking about moving away to go to college- and she won't even get herself toast most of the time! Unlike most kids (including my son), if we don't get her something to eat, she will just not eat. It seems that her fatigue often outweighs her desire for food. This is just one example of my worries about her going away. Fortunately, I have a sister who lives close to a university out of state so we are trying to introduce the idea that she could "go away" to my sister's. Anyway, I feel your frustration. It seems we are now signed up for life-long care (but something we will willing do). Thanks for letting me work this out. Sarah

Hang in there Mothers! We went through the same things for a number of years while my daughter was in college. She had difficulty doing lots of every day things at home. If she went anywhere with her friends, she would sleep 24 hours to try to catch up or regain her strength. After her thymectomy and much experimenting with the medication, she finally got it under control. She was able to go to school, work, fell in love, (yes, she lost some of her "prednisone weight". She did almost everything independently and without help. She came off all meds except an occasional mestinon. When she got pregnant with her second child things got really bad again. She is now on prednisone, mestinon, and plasma exchanges every eight weeks. She has lots of problems usually before her next exchange. We are about a week and a half away right now. We now do lots to help her with the children. Sometimes her house is terrible because she can't fold the clothes, run the vacuum, pick up after the kids, etc. She does well to have clean clothes for everyone to wear and prepare the occasional meal right now.
Depression is another major issue for her. She was very independent and had been doing her own laundry since she was about 13. When the mg is worse, the depression gets worse. During the times that she is unable to do the things that need to be done, preparing meals, taking care of the kids, normal household chores she often eats very little. By the time she gets a meal on the table, she doesn't have enough strength or energy to eat it.
Because each case of mg is so different and there are few that have been diagnosed as teens, doctors often don't know what to do. We found a new doctor about a year ago that has been wonderful. He hears what she says not what he thinks she should be saying. Remember that they call it practicing medicine because someday they will figure it out and get it right. Different doctors do things differently. I have been where you are and it does get better at times.
I have also been accused of doing to much for her and babying her. She is my youngest and sometimes even my other children don't get it, but she would much rather not have me doing anything when she can do it. We have faced some jealousy issues with the siblings because her kids are here more often than theirs. I wish that she didn't need the extra help, but I will always be there to help when any of them need me. That is just what mothers do.

NanaMar- Was your daughter depressed right away after diagnosis or did it develop after a couple of years? The doctors had me take my daughter to a therapist to make sure her fatigue wasn't from depression. (I knew it wasn't - because I have a son who suffers from it occasionally- and the therapist confirmed this.) But, I would imagine that at some point the "foreverness" of this disease kicks in. How could you tell? I really hope your daughter can start feeling better. Sarah

Hey Everyone :) Here is an update on Brianna. Whe sees a cardiologist specialist at West Virginia University on July 9 and her thymectomy is scheduled for July 10. The surgeon there says he will make up his mind once he evaluates her but is putting her on the schedule because he is sure that is the way to go. They don;t do the DaVinci Method so that means 8 weeks of doing nothing. She is NOT looking forward to it and is depressed because she is having such a terrible summer. She started having trouble breathing at night so they have increased her Mestinon to 180mg at bedtime. I hope everyone else is feeling better !!! It is just so difficult to deal with as a teen. I need your support Moms and LOTS of prayers for us both. Thanks to everyone for listening. xoxo

They are not doing IVIg first? Supposedly this makes them stronger for the surgery and helps with recovery. All the docs, even the surgeon, seemed to view this as standard procedure. My daughter's IVIg was paid for by an immunological study at Stanford. Supposedly it is hard to find pediatric patients who are having thymus glands removed. (They just wanted her blood before and after the surgery.) It may be worth calling pediatric immunology to see if anyone is running a study. (The doc at Stanford arranged everything for the IVIg. We just showed up.) Just a note- The hospital told us over and over not to bring any meds with us at surgery time but I brought mestinon anyway which turned out to be good because the pharmacy didn't have any in stock (because MG is so rare). The surgeon had me give it to her just before surgery and afterward in the recovery room. I know her symptoms must be getting scary. I remember those times. Thinking and praying for you. Sarah

BigMamaTamTam.....We are sending prayers your way from Iowa! Natalie had a total sternal split thymectomy in June 07, one year after her Dx. Had it on a Tuesday morning and came home Wed at noon. Our cardiacthoracic surgeon and neuro believe in "getting it all" and that even any fatty tissue related to the thymus needs removed , we were told that sometimes tissue grows back and this would insure that we did not have to worry about having to put her through surgery again. I am not even sure if the Da Vinci is offered at University of Iowa Hospitals! Natalie's c-scan was WNL but upon removal the thymus did have hperplasia...an overgrowth of cells...that did indicate it needed removed. Again, like the other treatments, I think it depends upon the doc and who you trust and feel good about. I remember Natalie asked Dr Iannottoni when he asked her if she had any questions and she asked" How many of these do you do a month and how long have you been in practice?" I thought "oh, my!" but not a problem with him at all....he told her they were excellent questions....at this time I was not aware that he was THE head of cardiacthoracic at the U, could have an ego the size of a football field, but was so very kind. Our neuro also knew and had worked with De Iannotoni many times in the past, and we trusted him 100% as well!

She was in quite a bit of discomfort, I have to admit following the surgery. She took the hydromorphone for the pain BUT make sure she takes it with food, brown sugar oatmeal was Natalie's choice..It is also very important to do the breathing treatments to insure the full inflation of the lungs and not develop pneumonia.....We were up every 4 hours the first 3-4 days, and it slowly did get better....she had no complications with the surgery and we are still hoping that it will help the MG symptoms.

She is my hero I have to say, we were just talking last night about the surgery and how much we have learned over the last 2 years, she has already gone through more than a lot of adults do in their lifetime....sometimes it has been very hard, we try to say the mantra" Thank you God for the many blessings thou has bestowed upon us"....she did not have to wait years to have a dx, and we have found wonderful, compassionate doctors.

Natalie had her surgery June 26 2007 right after HS graduation and started college in August. Her strength gradually returned and until the MG progressed and she had increased fatigue so she did do well with the surgery....We will stay in close touch and definitely have the Iowa angels sent to West Virginia on July 9 and 10 for sure!!

Please stay in touch, know you and Bri are not alone! Warm regards ( and apologizes for being so windy!)
Sandy

NanaMar....thank you so much for sharing with us, I hope that your daughter will start to improve soon...it is a multidimensional and multifamily disease is it not? ....especially for mothers....I love your statement" That is just what mothers do"! Blessings to all of you!
Sandy