Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I'm 13 years old, and i was diagnosed in august of 2010, but symptoms showed when i was 10. I've been on mestinon since september, and it is working great for me, i got almost all of my abilities back, such as smiling, running, so on and so forth, and i take it 3 times a day. But in summer 2010, my MG got so bad, that i had to crawl up the stairs in my home, i would collapse when walking down the stairs, i couldn't chew, swallow, or lift my head up. I also had really bad double vision. In July, i had got an MRI/CT scan and i found out about the MG. But at least i told my eye doctor that i was having fatigue, or i never would have been diagnosed that soon. But life with MG is a nightmare ; an up & down road, but i'll get through & stay strong and i want you guys to as well. :D Enough about me, how has life been for you with MG?
The best thing you can do is to remain positive and upbeat, take plenty of prednisone and imunosupressants.
Life can be good. Your doctors will probably make lots of mistakes along the way, so you will need to learn what you need to stay well and ignore them...just get the drugs you need to keep your symptoms at bay.
I can't do most of the things I could do before MG that made my life whole, so I just adapted, enjoying those activities which do help. For me, it's riding motorcycles and camping. Find what works for you and go for it. And do know there are lots of people around here who can relate and who care!
Curt
Because of your age, it may be beneficial for a thymectomy, and that sounds scary so talk with your doctor and your parents about the best course to take with your MG. All the drugs/immunosuppresants carry risks, but Cellcept is one of the most successful and least risky ones out there based on information out. Only thing is that it can take awhile to work for you, and there are no guarantees. I worry about use of Prednisone myself, and my neurologist and I do not wish to use it due to the risks involved. It really depends on your comfort level with this disease and the course it takes. Perhaps IVIG is something you can consider also. Since you are 13 yrs old, I believe you really must make the right decision, as nobody wants you to be on drugs for the rest of your life. Gotta do what you have to though.
We are here for you Brianna! We send love and support....Best wishes for peace,
TJ
Here is a listing of some treatments used for dealing with MG:
http://neuromuscular.wustl.edu/mtime/immunerx.html
Keep in mind also that Mestinon is not a treatment for your MG, it will only help deal with the symptoms(like a cough syrup from the store for a cough, -antibiotics would treat the virus) and you may have to adjust your dosage as needed, not to exceed certain amounts within timeframes.
I'm sorry you're having to deal with MG at such a young age. I'm so glad you were able to get diagnosed and started on mestinon and have had such good results with the mestinon. It sounds like your parents have found a good neurologist for you.
Most of us here are older and the treatments are not always the same for us and for those in your age category. I have heard teenagers are more likely to experience remission than the older folks. I hope you don't have to resort to the medications that can cause so much trouble later in life since you are so young. Do what you can to learn as much as possible about MG. It's true that you and your family are going to need to be very informed about MG in order to make sure you always get the best possible treatment. Are there any other cases of MG in your family?
You mention you had an MRI/CT. Was this of your thymus?
Life with MG for me has been a learning experience. I've learned to never give up on what I want to do and to find a way to make life as normal as possible. It's hard to learn to approach life from a different angle when you're used to doing things a certain way but it's necessary sometimes. Learning to conserve energy and use what energy I have in different ways so that I can do the important things has been a good thing.
I'm glad you found us here,
Cathi
It can be very difficult for people to understand what you're going through and they may not take the time to understand either. Just do what you can and do not overexert yourself. You do not want to push it...to impress or hide/mask your condition. Embarrassment can be hard to deal with. You will have to be very strong minded and goal oriented to get better, and/or hopefully beat it into remission.
Welcome to the site! I am sorry about your diagnosis. I am impressed that you have reached out for advice and support. Everyone on this site is really helpful and supportive. It takes a while to find what meds work for you and the correct dosage. They call this the snowflake disease because we are all a little different in our symptoms. Each day can also be different as far as what you can do and how you feel. Stay postive! It can all be a little scary but we are here for you. Take it easy, don't push yourself too hard and be sure to tell someone if you are feeling really bad. As of late, there have been a few other young people and have joined. You might look back at some old posts. "Are there any teens on here" I also read that there is a MG support site just for young people
www.dailystrength.org/groups/myasthenia-gravis-for-young-people
Hugs,
sherry from texas
We all understand what you are going thru. As Catnap said, most of us are older but that doesn't mean that we don't know what you are experiencing. You're positive outlook in dealing with this horrible illness is remarkable for someone so young. My admiration goes out to you.
Each of us have experienced the feeling of being alone with this illness at one time or . We have learned through this support group that we have many friends out there that are there for us no matter what. I have only been a member of this group for about 4 months but have found it to be very helpful both emotionally and educationally. These people never judge us or criticize us when we are feeling down - instead they give us their heartfelt support and encouragement.
As for your mother - please don't be too quick to judge her. You have to remember that all of this is as new to her as it is to you. As a mother myself, I think that I can probably understand her feeling of helplessness in knowing exactly what to do. She wants to take away all of your suffering but knows that is impossible and she is trying to find a way of dealing with your illness and how best to comfort you. The best advise I can give you is don't give up on her. Just keep talking with her. Let her know how you feel both physically and emotionally. Let her know that you love her and need her help and support in dealing with everything you are and will be going through everyday - that means sharing your good days as well as your bad days. Be patient and give her time to come around.
Each of us and our loved ones deal with this illness in our own way. Our loved ones need time to grasp what is going on with us and what we need from them in the way of physical and emotional support. As they grow in their knowledge about our illness and how it affects us they can better help us especially on our bad days.
When all else fails, always know that you can turn to us here for encouragement and support. The most important thing of all is to keep a positive attitude no matter what.
I guarantee it's not that she doesn't care, it's either simply a situation of her not understanding this rotten disease we all share, or her not wanting to make a big deal out of your problem days. I bet anything that she's just trying to treat you like she would any other day (as a spoiled teenager..LOL.).
So sorry to hear of someone so young having to deal with Mg and all the issues it can bring. Just take it day by day. Enjoy the good days, and relax on the bad days. Know that the bad days will pass, and there will be good days coming...
MG got me out of doing yard work, so there is an upside...:-)
I would definately discourage taking prednisione, I have been on it and the effects are horrible and you are very young. I would advise you look into cellcept or azathiorprine (spelled wrong) and try IVIG. These help and the side effects arent as bad as prednisone.
Since the 1950s and the use of prednisone for treating the acute symptoms of MG, other therapies, spinoffs of other research, have shown their value in treating MG long-term. These include CellCept and Imuran. IVIG and plasma exchange, too, have proven beneficial. For acute symptoms, combinations of prednisone (or other corticosteroids) and PLEX or IVIG prove useful. Where generalized symptoms present, prednisone is - for better or for worse - a very important tool.
You've got to work this out with your doctor, Brianna. If you are stable, you will probably just need to stay the course with the drug regimen you are currently on. If you find yourself having breathing difficulty, you need to immediately get yourself to an ER, where you can be assessed for appropriate treatment.
Stay with us in the group. Let us know how you are doing every day. Ask questions!!!
Curt
Hang tough! MG is a tough condition to find a balance for. Many of us are gone years trying one treatment or another with limited success. And then once you think you got it right the game changes again. A positive attitude definitely helps as it would be very easy to fall into a depression. This condition is so misunderstood that the average person doesn't really realize that something is wrong or worse they think it you are making up your condition. My teenage years were particularly difficult for me, I had no diagnosis than in my doctor had very little understanding of the condition and they thought my sluggishness was due to me being lazy. I do remember my PE coach laying into me in front of the class because I could not do a pull up or keep up while running. That sent me into a very deep depression.
Now that I have been diagnosed those mysteries of all come clear. Unfortunately the damage has been done.
The new treatments have gone a long way in keeping us in a reasonably normal condition so we can function well and maintain a good standard of living. I like the other person would caution you about the long-term use of prednisone I was on the large dose for about three years and really paid the price. I would definitely get a second opinion from a good neurologist just to be safe.
I also won a second what was said in an earlier post and welcome you to the site. The people are very friendly and helpful here and we all can relate to your situation even when you feel that others do not, and that is so important in keeping your spirits high.