Hey Sarah,

Is her weakness just in her shoulders or in her arms in general? I know that I was a bit older than her when i was diagnosed but I don't recall any change in the first years from 16 to maybe 22 give or take. Have they checked her thyroid? I've got some new issues with my thyroid and it is causing fatigue and some weakness that isn't normal to my MG.

They have checked her thyroid 4 times in as many months but all is ok. You say nothing changed from 16 to 22, but then what change occurred? What was your disease level/symptoms when you were under 22? Any info would be much appreciated. Thanks. Sarah

I feel like i was stronger starting around then, I'm not sure if it's not just being more mature and able to control my meds and activity better. But i feel it was more of a struggle when i was younger. I was under great control right until this thyroid issue in the last month or two, Thats about 8 really as close to normal years as I can remember. Another question does your daughter notice these issues near her period. I have always had worse weakness about 2 weeks to 10 days prior to my period, that hasn't ever been validated by my doctor but that could explain part of the improvement with age as my hormones kinda mellowed after my teens. Feel free to message me if you have any more other issues I'm happy to share!

Thanks for the response. It will be nice when she realizes that a regular sleep/med/PT schedule will help her in the long run. I noticed right away that there was an increase in symptoms right before and during her period. (And many on this site confirmed it.) With the approval of the pediatric neurologist, she now takes BC for nine weeks on/one week off and it has helped that up and down tremendously. Hope you get your thyroid straightened out. Thanks again. Sarah

Greetings! We stumbled upon this site by accident and it looks very promising! My daughter was DXd with MG by ptosis (droopy eye) in June of 06 at age 17, had the "ice test" which was thought to be positive, then cat scan was negative, then the mestinon test, this was inconclusive. This all happened 1 week prior to a 3 week trip to Europe to sing with the Iowa Ambassabors of Music, no worry about the plane, just the MG. All blood work was negative, even the MUSK, and contiues to be so. She saw our local neruo who never thought it was NOT MG, referred us to Dr Kelkar who had been head of neuro at the University of Iowa, but had left for private practice in Minneapolis. She saw him in 12/06, did an EMG, was slightly postive, no meds at this time. Had a sternal split thymectomy in 6/07 with Dr Iannonti at the U of Iowa...Dr Kelkar is amazing!! A very intelligent neuro with a HUGE heart and the patients best interest is always his focus!!

Natalie did well( well sorta of), til the fall and winter of 08-09, had increasing fatigue and weakeness, we thought due to working too many hours and attending school full time. Local neuro did not really pick up on increased symptoms and in retrospect we were pretty clueless....the disease is so insidious and the symptoms can be that of other auto immune disorders....So...off to the U of Iowa to see Dr Swenson as Natalie will be in Iowa City to continue college and she suggested prednisone and Immuran...YUCKY, yucky....while the meds have helped with strength, the puffy face, slight weight gain AND the moods that go with these drugs it is very hard when you are 20. PLUS the fact that when you tell people what you have they think you have ALS or MS, and most of her friends do not have a clue even after you explain....can be very socially isolating when you are in bed at 10 pm, and cannot go to the late movie because you have to prioritze your strength!!

We try to be as encouraging, patient without babying her, although I have been accused of "modelcoddling her"...the MG adds a TOTALLY different dimenison to life.

We have also had to go from a $200 medical deductible, to a $4000 one, NOW a $6000...this has also been one of the biggest worries we have....we are not wealthy people, make too much to qualify for any assistance, and have pretty much trying to hang on with not only the chronic disease of MG, but $$ concerns as well....although there are many in far worse $$ shape than we are.....Ok, I probably have bored you to tears, but any suggestions on coping on a day to day basis, tricks to make the day easier, suggestions on comments to say to people, all would be appreciated! Blessings and good luck to all of you out there!!

PS...she was also DXd with hypothyroidism a year before the MG,...hmmmmmm....

Thanks for all of the sharing that we have read, it helps us not feel so isolated! Sandy

dear sarah,
Myasthenia Gravis is very rare in teens. its hard to diagnose and treat. im 14 and was recently diagnosed with it. they told me i would live a normal life, but i would need treatment. most dr's arnt sure of dosage for teens because its not common. i would love to help you and awnsere any questions you have. feel free to message me.

Hi Sarah, We were told that there is nothing the matter with the muscles or the nerves with MG, but the connection between the two. My daughter has had trouble drying her hair, because she could not lift her arms for that long. We have also found that most neuros have never seen anyone with MG in their practice and just do not have the expertise. My daughter says that ones who have a real idea about MG do a totally different exam...they are much more aware that it is the repetitive exam, it is hard to convince them they that they really do not know...we have been very fortunante in this case....regards, Sandy

Thanks for all the responses. My daughter was just 13 when diagnosed (but had severe symptoms and a high antibody count so no trouble diagnosing). All the doctors involved are trying to keep her off the steroids and autoimmune drugs as long as possible to avoid the long-term side effects but her MG is not very controlled. To MamaSandy- Is your daughter just declared as "medically dependent" and, therefore, allowed to stay on your insurance? To Breezylynn, how are you doing- physically and mentally? Are you going to high school next year? It's great you want to share about your disease. My daughter's "head" MG doc is supposed to call me today because he has some ideas about how to "proceed cautiously". Thanks. Sarah

Hi Sarah....Natalie is a full time college student...as long as she is full time she has the insurance, if the MG causes her to drop to part time, she will lose the insurance. This makes alot of sense does it not? Just when you need the most help you get ditched! We are not sure what will happen then. Maybe apply for a state program, but I am pretty sure our income is too high...I am not familiur with "medically dependant"...is this something you have to qualify for? I hope you had good news from your daughter's neruo, I thought trying the Mestinon was being cautious with Natalie, following the thymectomy, but the nature of disease is so different in everyone.
Warm regards,....Sandy

My conversation with the neuro was disappointing. He gave me this speech about how some people with a lot of weakness persevere and others without a lot of weakness don't deal with the disability well. (Implying that my daughter's extreme fatigue may be psychological). When I told him that we had been taking her to a therapist who says that she's not depressed at all, he said that he thinks it's still a possibility. It drives me crazy because my daughter sleeps when she's fatigued and when she feels better she's with her friends. The neuro wants to try her on 90 mg of Mestinon with 1/2 a robinal twice a day to see what happens. I don't think it will change anything but we'll give it a shot. Thanks. Sarah

I personally would think about finding another neruo...the fatigue and muscle weakness in MG are very real, and I think his ego must have gotten in the way. We have been very lucky in having docs who really listen. I do think to a certain extent that depression( remember this can be exhibited in a number of ways, too much sleep, agitation, etc) goes along with the grief (literally) of having a chronic disease. Not that life does not go on, but there is a grieving period for what"could have been" had they not had this disease. It is not like we can toss them back :), and would not if I could, but I know off and on that Natalie wonders if she will be able to handle more college, a carreer, not to even consider being involved with a young man....I have to admit that I would take the disease from her in a heartbeat, but I cannot. So,....I really have no good ideas I guess...I know that the Mestinon did help Natalie for awhile, but the weakness increased, therefore the prednisone and Imuran. I do not know anything about robinal at all. One thing I do know for sure is that the MG has really given new meaning to taking one day at a time. This disease is so different not only from patient to patient from hour to hour.....Good luck and stay in touch! Keep smiling!
Sandy

Hi Mama Sandy,
Thank you for asking about Breezielynne. She is my daughter. We were VERY fortunate to have the pediatrician that she has. My sister is also a nurse and she immediately thought of MG when I told her of the problems and how they had continued. The pediatrician sent her to a sleep doctor and a neurologist. The sleep tests all came out well. The neurologist told us he could tell with one lab test. She had that done and a week later, he diagnosed her with MG. owever, in our area, he does not treat children so he had no idea how to treat her. On June 2, my Sister and I will be taking her to a child neurologist in Charleston, WV. Hopefully, we will know more then. None of the above doctors have ever heard of a child her age this it. They were all dumbfounded. That is why we feel so fortunate to h ave caught it so soon. She has started on Mestinon 30mg four times daily. Some days it helps, and some days it hasn't helped much. Yes she will start High School in the fall. We will take it one day at a time. Thank you all so very much for your interest in her condition and for your prayers. Please keep us posted on anything we should look for and we will keep you all posted. Love, Tammy

BigMama- Your daughter's case sounds very much like mine. My daughter was 13 when she was diagnosed. She was a power volleyball player and started having arm fatigue during practice. When she slurred her speech at night, we took her to a pediatric neurologist who thought she had a brain tumor but also ran the blood work for MG so we had a diagnosis right away. She now is 15 and sees many docs (we live in the SF bay area). Most of the docs say she is the youngest diagnosis they have seen. This can make things difficult because the pediatric docs and the adult docs sometimes don't agree on treatment. My daughter's case progressed very rapidly after diagnosis. Within 8 weeks she was bedridden. I believe removal of her thymus gland (with scopes thru her left side by a pediatric chest surgeon) saved her life. It's going to be tough for you not being by a large medical community. Let me know how she's doing. To Mama Sandy- I think there was some mourning at the beginning and there is still some frustration now, but my daughter's not the worrying type. She just kind-of forges ahead. She's on the honor roll at school, has a nice boyfriend and a few really close friends etc. I just really think something more physically is going on. When she complains of fatigue, she gets really pale and dizzy and she can immediately go into a deep sleep that can be hard to wake her up from. It's also on a cycle. She sleeps a lot like every 4th day. Anyway, Stanford endocrinology said not to put her on steroids because the drugs they would maybe have to give for bone loss (my daughter is Korean-adopted- and thin) could compromise the health of her future children. Anyway, so good to hear from moms. I've, at times, felt like I was intruding by asking all the actually ill people for advice. It's such a bad disease. Thanks. Sarah100

I am another one of those moms whose daughter was diagnosed at 19. I know that is a little further down the road than 13 and 15, but the things that you are describing sound like many of the things that we went through in our early years. Mary Michele was a sophomore in college when she was diagnosed. She had a thymectomy within a month of the diagnosis. The neurologist assured us that she would be "cured" after the thymectomy. It didn\'t happen much to his surprise, but not to ours. We had read enough to know that wasn\'t always the case. She took mestinon and prednisone at the beginning along with several rounds of plasma exchanges usually with 5 at a time. The doctor did not want her on the prednisone so started her on Imuran and decreased the prednisone until she was off of it. She did well with the Imuran, but went off of it when she married and became pregnant. After the birth of her son she did well and did not have to restart the Imuran. She used the Mestinon as needed which could be anywhere from 0 to 6 a day. When she got pregnant a second time she began to have lots of problems with the mg. She had to have 5 plasma exchanges while she was pregnant. We thought things would improve after the baby was born, but that didn\'t happen either. She continued on the prednisone and mestinon while she was breast feeding, but continued to have problems with weakness. At times she was unable to pick up the baby or care for her 3 year old. She lived in fear that she would drop the baby. She did not drive for almost two years because of the problems with double and blurry vision. She stopped breast feeding earlier than she would have liked because the neurologist wanted to get her back on the Imuran. He started tapering the prednisone. When he got her down to 30 mg of prednisone, she was unable to turn over in bed without help and certainly not able to be up except to lay in the recliner. I called to tell him that this was not working and he said " There\'s nothing wrong with her, she just wants to get on disability." This was after 12 years of seeing and being treated by this neurologist. I was horrified, angry, and unsure what to do next. I called a friend of ours who was a general practitioner and had delivered all of my children. He recommended Dr. Beeson at the Muscular Dystrophy Clinic saying that he was the muscle guhru ( not sure that is spelled correctly) We saw him and not having any records he asked her to cut down on her mestinon. He also did blood tests, etc. Her antibodies were extremely high. He admitted her for plasma exchanges. We have been seeing him for about 18 months now. We know the Imuran is not working so it has been discontinued after taking it for almost two years. She is having plasma exchanges every 8 to 10 weeks. We have been through a lot. At times she has been very isolated socially because she was unable to go out with every one and not get to bed until 2:00 a.m. Friends just didn\'t understand because she looked pretty normal other than the huge weight gain. She gets lots of strange looks when she uses her handicapped parking permit. Depression is an issue at times. Frustration is her constant companion. She wants to be an actively participating parent and many times cannot. My best advise as a parent is listen to your child and believe what they tell you. If you are not comfortable with what is happening or if too much weakness persists LOOK SOMEWHERE ELSE FOR ANOTHER DOCTOR. I will always regret that I didn\'t seek another doctor sooner. Keep looking until you find someone that LISTENS. I am sorry this is so long and rambling, but I just felt like maybe you could learn from my mistakes.