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...

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Kimber71 10/12/2011

Like a lot of others I sort of thought I was getting progressively crazier over the last 5 years. I started off tired. Went to a doc. She said eat right and exercise. Did that and did NOT get the "gee I feel great". Just got tired. Constantly going back and forth with Anemia. Got diagnosed with spinal osteo-arthritis. This went on for about a year. Got diagnosed with Asthma and allergies despite my argument that I was a former Active Duty Marine and current Navy reservist. Got recalled to Active Duty with the Navy for a year in Iraq. Now I was constantly exhausted. When I came back I thought some rest and relaxation would change things. Little by little it felt like I was getting worse not better.Started getting clumsier constantly bumping and getting cuts and bruises. (Has the shower threshold always been there?! and what about that door frame?) Went to my GYN and got a procedure to stop me from having a period to get some energy back and stop the Anemia. Still exhausted and still back and forth with the Anemia! Following up with my rheumetologist I got diagnosed rheumetoid arthritis in my hands. (Happy 40th birthday!) Started taking Plaquinil and noticed that along with being chronically exhausted even a moderate amount of physical activity makes my hands shake like some kind of addict. Not to mention my allergies are playing havoc with my voice almost daily. So it was back to the rheumetologist and "what's with Arthritis and the tremors?". She started questioning me. My exhaustion (which I had mentioned at every appt), my tremors, my voice, my clumsiness and then she said she wanted me to see a neurologist because she thought it was possible I had Myasthenia Gravis. "Mya... Gra... what?" "What is that? Some kind of virus or something?" I started researching and a lot of it fit but no ocular issues and no complete lass of muscle ability. It was going to be 3 months before I could see the neurologist she recommended I was supposed to go to Germany in between. So I got an appt with another neuro. in between. This guy seemed to almost make his opinion right away. His physical exam was like he was looking at an 80 yo woman! His diagnosis was to that I was getting older, possibly menopausal, and therefore weaker and that me not sleeping well and anemia were why I was "tired". I argued that I was not "tired" I was exhausted, the Anemia comes and goes and by the way buddy 40 is not old! Quack! Well didn't go to Germany (military funding). Actually a stroke of luck because I wasn't sure I could keep up with the activity level. Finally got in with a neuro. who works with the MGFA. He did a really thorough physical and EMG and said it was definately MG. He started me on Mestinon 3 times a day. 1/4 pill once a day, then twice a day working up to 1/2 pill 3 times a day. Today I had my first 1/2 pill. I feel pretty good. I would like to jump to the 1/2 pill 3 times a day right now. (I won't.) I go in a few minutes for my CT to check for a Thymoma.

Now that I have rambled on about my history... Now what?! I am happy that I am not crazy. (Which I was really starting to believe because after all no one else I know feels like this.) When do I feel better? Will it get better or worse? I have been strong and active my whole life. Now... now I curse every packaged product in the world. Why does everything have to be so darn hard to get into? I'm happy, I'm sad or is it scared? I don't know anymore.

Now what?

Ceegee22 10/12/2011

Welcome to this website. You will find everyone here very supportive and understanding of what you are going through. They have a lot of knowledge that will help in your walk with MG. Your symptoms are different from mine, but with MG there is no two people alike. I found out in September that I too have MG, so I don't have any answers for you at this point. I started on Mestinon, but will soon start on one of the other treatments. I am sure soon others will see your discussion and be able to help. You are not alone, so stay in touch.

adamrach 10/12/2011

I am glad you got a dx, all of the emotions you are feeling are normal. It is scary and frustrating and all the above when you get dx with a major illness. First step is going to be hard and that is accepting it, next step learning how to live with it, the best life possible :) I have had it for 23 years, there have been good years/days and bad ones. There is a wonderful group of people here to support you, feel free to come and ask questions as they pop up and you wonder about them. It is hard to go from an active life to have normal things limited sometimes. Rachel

DebbieF777 10/12/2011

Welcome, yes many of us have different ways MG hits us and many of us have other autoimmune or neuromuscular problems, but one thing I have notice is that many of us, including myself, are emotional wrecks as we learn to deal with this illness. There are many great people here that will route you on and even scold you if needed.

bweeds 10/12/2011

Welcome and sorry you are here, because of the reason, but glad that you have a diagnosis and are on the road to getting better. Although your Mestinon dose is low, it is sometimes better to start that way, if you can, so it gives your tummy and other members of the GI tract a chance to adjust to it. Just be sure to take it with food, especially as you increase it. You are riding an emotional roller coaster now, that is perfectly understandable and the reason I am always "OK". Maybe someday soon, I will be doing well enough to be good or bad all day, instead of everything from good to horrible. You can even hope to have days when you feel excellent. It 's a relief to know you are not crazy or lazy and most of us have been there, wondering. We are all different, but probably someone will be on the same track with you even if it is a different one every day, and the people here make the ride easier.
b.

Kimber71 10/12/2011

Thanks for the support. I guess it is just good to know I am not the only one with these issues and that I'm not crazy or lazy or whatever. I am definitely up and down and all around.
I do have a good neuro. but there are no support groups near by. Do you guys have people with MG local to you?

adamrach 10/12/2011

I only have one person locally that I know that has MG. If you are on facebook there is a really good support group called Myasthenia Gravis Flakes, they are a great group, great support, lots of good info.

Ceegee22 10/12/2011

I don't have a local support group. I live in Washington and it seems most of the people I know with MG live on the opposite side of the states. That is why this support group has helped me, because I am so much alone here.

adamrach 10/12/2011

Ceeqee22 sorry you are feeling alone. I understand all my family lives on the west coast, so I feel very alone on the east coast and with a difficult disease. This support group is great for support and the one on facebook. Feel free to message me anytime if you need to talk.

annkemp 10/12/2011

welcome aboard
We are definately on a ride.
Sorry to be welcoming you but we are in this boat together and I hope we can comfort you.
Each day is different and the emotions go up and down too. We can be grateful some days, happy some days and some days sad and depressed. We do our best. We rest and try to find a pattern with our health. It changes. We get exaused and we get energy spurts. We get really scared and then other days we have peace.
Glad to hear someone is finally giving you the health support you need. I hope your family understands too.
Take care
Ann

Kimber71 10/12/2011

Thanks everyone.

Hang in there Ceegee22! You are not alone. You said it now you need to believe it! We just have to keep working a network that will help find some folks a little closer together.

Adamrach, I'm not so sure I'm ready to be on face book with this yet. Only family and a couple of friends know right now.

I'm kind of mixed about telling others. I did order a medalert bracelet and ID card just in case of an accident or something.

Do you tell others?

Do you wear a medalert bracelet (or something)?

adamrach 10/12/2011

Just so you know it is a closed group on facebook your family and friends will not be able to see your posts unless they are apart of the group. I wear a medic alert bracelet, have not had a medic check it once yet LOL, but it still makes me feel safe. Sometimes I tell people other's times I just wait till I have a hospital trip or something and then they ask and then that opens the door to telling them. When I was younger I didnt want to tell anyone. I didnt want anything to be wrong with me. And since sometimes with this disease it is hard to tell on the outside that you are struggling people will never know unless you tell them. After you get over the shock of the dx and start to understand the disease better it will be easier to tell people I think.

annkemp 10/12/2011

I wear something on my neck to tell my condition when I drive alone. I tell my closest friends to remind me to take mestinon if I start really complaining about symptoms. One time I forgot mestinon and my mind forgot it was an option. scary but did only happen 1 time.
Ann

snowbeltfolkie 10/12/2011

Isn't this MG support group - just the best thing!
Aside from finding - the right doctors & meds?
This is the most helpful & most useful part - of my personal therapy!
I'm sorry you have joined us, on this MG roller-coaster ride (becwithkids phrasing).
The long time it took, for you to wade through misdiagnosis, until you finally found a knowledgable neurologist? Many, many, many - of us? Went through the same thing.
Glad you finally found some help. It's true it seems: everybody's MG (and MG's lousy sidekicks, that show up, on occasion) - is a very individual thing.
At least, you will find someone, here? Who has experience - with any kind of treatment - that medical science has, for treating MG.
You will also find? A lot of success stories here, of all kinds.
You will also find - a lot of courage!!

becwithkids 10/12/2011

I am glad you found us too! This group has been a very informative and supportive place for me (a bit addictive at times too)! I ca only take credit for "DRIVING our roller coasters" though... The MG roller coaster has been running long before I had even heard of MG. ;)
Welcome! I am sure you will find out how not alone we really are as you ride along with us! Now throw those hands up and say "WEEEE"!
Love, Becca

Ceegee22 10/12/2011

I didn't mean to sound like I am alone now, because since I found this group I totally know I am not alone. I am just finding I haven't found any with MG here close by. I am sure they are out there and don't know about this group or haven't been diagnosed yet. I have told my doctor about this website, just in case any of his patients need to talk with someone that can understand. Thanks Adamrach for the offer of support. I may not know much about this yet, but I do look everyday to see if someone new comes on, so I can welcome them like all of you have welcomed me. 10 Stars to all of you********* Have no idea how many stars are there with the eyes playing tricks.

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