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...
Hello everyone!
Just wanted to get active on this site and tell you all a bit more about msyelf and my short journey so far. I just turned 21 in october and attend college in illinois. On December 5th I got diagnosed with MG, and im sure as you all know, it sucks. It started off by just some weakness in my right arm, but I convinced myself it was a pinched nerve or something minor. As the school year went on, I started to have muscle weakness in both arms, which didnt allow me to preform everyday tasks. That stressed me out a ton, and before I knew it, I couldnt chew foods, make facial expressions, and had alot of problems eating and moving my mouth. My rigght eyelid started to droop a bit, and when I walked short distances or up stairs I was painting like dog. It all really came at me all at once. I freaked out. I went to the school doctor who tested me for MS, possible stroke, lyme disease, and a few other things. All negative. I then got an appointment with a neurologist who did some blood tests, incuding being tested on a whim for MG. He called me two weeks later during finals and told me the test came back positive.
I went into Chicago for a second opinion a week later and my new doctor admitted me that day, and started me on IVIG. I only got it for 3 days because I had severe side effects, on day three and four, so they left the final treatment out. It was a really rough experience. She put me on 30 mg of mestinon 3 times a day, more if needed, and 40mg of steroids every other day.
Last friday, on January 5th, I got my thymus taken out through incicons on my right side. The procedure went good, and I am recovering. My chest is so sore, and I am having breathing problems which Ive read is normal. My body is very weak again, and all I want to do is cry and sleep. I dont know what to do now. I feel so suffocated by the events of the past month. I hate this stupid waiting and guessing game.. when will I need IVIG again? When will my symptons come back? When will the amount of pills im on stop working as well and need to be increased? When will this surgery show signs of improvement? If it even does?
I am doing well, besides the recovering from surgery. I dont have any noticable weakness in my everyday activities, but I can definitely tell when the medications have worn off. And somtimes when im with group of people, or even just a friend or two, I get so tired and I start to lose my smile. If I could sleep all day, I think I could and I would. I dont like this new nomal. This is going to sound so stupid and irrelevant but I dont want to have to care about this. Why can I be like everyone else I am surrounded by and worry about grades in school, boy drama or what party to go to on the weekend?! I am feeling so depressed, and I dont think my parents or friends actually get it. Im sure it will get better with time, and once I figure out a routine for this disease I will be fine, but right now, I just cant seem to stay positive.
It is a great site and this list is, to me, a gospel of what to do/not do. Now Finally this last bit. Do not give up, do not dispare. Keep up the fight and you will gradually see your strength come back, maybe not to the point of dancing the lead in a remake of dirty dancing, but enough to dance at the party. Your friends and family are scared for you and that is why it seems they don't get it. Keep them informed and make sure you tell them the good and the bad. Family will stick with you, so will friends. The ones that don't were not friends anyway. Stay strong girl. Love ya
Myasthenia Gravis is a serious disease, but one that is treatable. Generally, the first year is the hardest as we have to get the symptoms under control and figure out the best treatment that works for us. Each of us is somewhat different, so treatment is also somewhat different.
It took me about 5 months with prednisone and mestinon to get rid of my MG symptoms. Then I had another 6 months tapering down the prednisone to figure out the smallest dose that would work.
Prednisone does work for most of us to get the MG symptoms under control, but it has bothersome side effects so we usually switch to something else for long term treatment. Most folks with MG do have to take medicine the rest of our lives, but with that most folks do well, and live a decent and reasonably normal life.
The thymectomy may take a year or more to help, but that too generally helps, sometimes getting rid of MG, but at least making less ongoing medicine necessary.
I tell folks that they really should understand that for up to a year, MG may mess our lives up mostly, but after that we do get our lives back and they are decent. Some folks have more problems, often because they have many other problems along with MG.
You are young and likely to do well.. You have already done the right things, got the right treatments and, if you are patient, you will likely be back to school and life next year. A year out of our life is pretty common.
I got MG at age 65, had a very rough first 6 months, then MF symptoms were mostly gone and I could taper prednisone (and didn't need mestinon) and 6 months later was off all medicine, one of the 15% who go into remission for varying lengths of time. 4.6 years OK now.
Good Luck
Russ
But I am surprise you had undergone quite through phases to recovery in just few months. That is good in a way you know you are really being “attentively “ look after by your doctor. It is something to make you feel positive. I tell you my friend, since I had all these weird symptoms, I was only given prednisone and mestinon to live through my despair. And seeing only vague results and more of MG symptoms nonetheless, I feel like I am inadequately look after. And while I am sharing what’s been going on with me. A sunny day to enjoy I’d say, just two days ago,(in my side of the world); to go out and enjoy when I suddenly had breathing issues with that pounding half-of-my-head headache; I gave my doctor a call, only to get a response..... “it’s all part of it”.
O-MG as in my ocular MG or Oh my G, I will die early! I cried that day and I said will I be trapped in this kind of life from now on or the fear of having a walk and it hits you, I can’t walk? It took me a day moping when I remember my kids. They are my reasons for living. I said either I will let it totally eat me or I will try to get up one baby step at a time. I did the baby step, breath in deeply and shut the door of pessimism.
We will make it. Just like the others did. We don’t know when... but for as long as we are breathing, we move forward. Keep a good and bright spirit, it helps. And bring along a reason to keep in your thoughts. God bless us all who stand through and belive in Him. I believe.
My experience with MG is now 3 years but mine i think is mild as compared to your stories. I took drugs for only 5 months and the serious symptoms reduced until i felt normal though i can't run or lift loads for long. I stopped using the drugs 2 years ago and now am adapted to this life. The most important thing for anybody with MG is to accept the condition and change your lifestyle to suit the condition. To me am normal except that i can't run or do anything like lifting heavy items. Am not sure if stopping the drugs was a good idea but i feel am at least ok.
The chest pains do get better! Good Luck!