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, I too am new to this support group and quite frankly I am so happy to see one. We don't have a support group in my town so I am going to need to rely on all of you. I just found out on Wed the 28th, that I have M.G. for sure.
It was discovered when they did the EMG all other tests came back negative, I knew something more than just old age (61) was going on, I hurt trying to stand up, had surgery last January for Ptosis in my eye (surgery did nothing for it), my voice changes at times and I get hoarse, and have major fatigue.
I decided that no matter the outcome to all of this I would just deal with it and go on with my life, I have since decided that this is bigger than I thought and I need help understanding it and not from a doctor that sees it all day and acts like it is nothing.
My local neurologist doesn't think I have M.G., the doctors in Portland Oregon at Oregon Health Science University Hospital are the ones that have diagnosed this. This hospital is 3 hours from me and I plan on driving it when need be since they are the ones that are willing to help me get through this.
Any insight to what is to may or may not come would be welcome, and thank you all in advance.
It was discovered when they did the EMG all other tests came back negative, I knew something more than just old age (61) was going on, I hurt trying to stand up, had surgery last January for Ptosis in my eye (surgery did nothing for it), my voice changes at times and I get hoarse, and have major fatigue.
I decided that no matter the outcome to all of this I would just deal with it and go on with my life, I have since decided that this is bigger than I thought and I need help understanding it and not from a doctor that sees it all day and acts like it is nothing.
My local neurologist doesn't think I have M.G., the doctors in Portland Oregon at Oregon Health Science University Hospital are the ones that have diagnosed this. This hospital is 3 hours from me and I plan on driving it when need be since they are the ones that are willing to help me get through this.
Any insight to what is to may or may not come would be welcome, and thank you all in advance.
Ask questions and learn all you can. Join the MG Links group on this page, there are a lot of great discussions on everything connected with MG.
Did your doctors start you on treatment? I was dx 2.5 years ago. I am taking 5mg of prednisone, Imuran, mestinon and recently IVIG.
Big hug!
I have to drive three hours to see my doctor, too. There are only two neurologist in the small town I live near and only one knows how to carry out treatment. He does not take responsibility for my full care, but does facilitate treatment, which makes it much easier on me. Maybe you can find a doctor that will communicate and help with treatment orders by your long distance doctor.
I tried to ignore my disease and just get on with life at first, too, but that isnot a good plan.
Have they made a plan for your treatment?
He told me I needed to see a therapist because it must be stressful to have a rare calcium disorder no one can diagnose. So here I am in 2015, still have the undiagosed, but treated rare calcium disorder (see a specialist 3 hrs away) and travel 2 hours in the other direction to see a neuro who specializes in neuromuscular disease. When we have rare diseases (my calcium one is 1 in a million) we have to travel to people who believe us. My neuro wasn't sure of my diagnosis but had me do a trial of mestinon and report back the results - amazing! I've had my life back in many ways.
My disease is likely progressing but I am so much better than I was before that I feel this last year on Mestinon has been a real blessing. I've travelled, exercised, played music and lost weight and gained muscle - all things that made me happy and put me in good stead for whatever the future brings.
I am sero negative for AChR, MuSK, and LEMS, negative for EMG and SFEMG so hope my neuro continues to treat me as though I was positive. I'll find out soon. I do keep good records and urge you to do the same. As the years of illness start running together I've kept a big Excel spreadsheet of my various tests which I refer to at each and every doctor visit - saves time as they search for bloodwork, etc. I now do a yearly summary so that I can see subtle changes over time, eg can I walk 10 blocks, made the bed, stand to cook dinner? Then when I head to this neuro I haven't seen for 14 months I have a "What is better, what is worse" document to read from. It also might be useful in the future if I need to apply for disability.
So stay optimistic but take care and listen to your body. You will learn so much from everyone here.
Flutebell
You will find adapting to MG happens over time. Take time to rest. I thought it was age. Yeah, part of it, but, MG, can take a lot out of you. Adapt. Take time out to smell the roses. For me that's a new way of life. I lived life full speed. Now, I am live maybe in the cruise lane, some days in the slow lane, some days on the couch. Its ok. Keep gong!! You got a whole new bunch of friends pulling for you.
Dee
I will certainly check with the neurologist in Portland and see if it is possible for my local doctor to help with monitoring me and administering medications, thanks for such a great idea.
I get very weak and start shaking, is this normal for a M.G. person? I honestly feel like I will faint away if I don't get rest. I have a very hard time arising from a sitting position. My shoulders feel weak and overall I hurt all over my body...is this M.G. or maybe a lot is from having fibromyalgia too?
Thanks everyone again for your help and support!
I see him and I call on the phone to update meds and sometimes like now he wants me to call him and tell him how I am doing.
It works great.
I hope all goes well for you.
I am happy you are here.
I did have a local neuro but he just wasn't has up on what to do. I prefer to get all instruction and direction from the pros. It works out well.
In the beginning each day brought on new aches and pains. I always felt better just sharing them so we are here for you.
You will get on treatment soon and things will get better.
Do you talk a lot? If you are a talker that may be why you get horse.
storm here in Michigan. Stuck in the house.Never hesitate to write.
My advice on MG is to read as much as you can about it starting at the myasthenia gravis foundation http://www.myasthenia.org/
MG is a rare disease and most doctors who don't specialize in it are not really knowledgeable about how to treat it and what it does to us. Learning about it ourselves helps us understand treatment and our progress.
Good Luck
Russ
Thank God I do finally know what I have and can move forward with treatment. I have a ct scan, with and without contrast on my thymus gland this Wed. they can't do a the MRI because I have a pacemaker, so we take what we can when we can get it.
I just want to feel better and I want to be able to do some of the things I enjoy doing again with out starting to do something and having to stop because I am so tired I can't go on.