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...
"There is no typical case of myasthenia gravis but, rather, this entity remains a clinical diagnosis that relies on a well-taken history, adequate examination, and appropriate interpretation of laboratory tests. To miss the diagnosis of myasthenia gravis is to cause the patient social, psychological, medical, and economic suffering."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2625490/
I do like to be positive most of the time but I also think it helps to share the struggles as well. On March 30, 2009 I left a job on temporary disability because the fatigue was so bad that I couldn't walk or think while waiting on customers as a designer.
I have spent 4 years with friends, family, and doctors thinking that I was faking my ability to work. Surely someone with my abilities can work somewhere they thought. At 57 years old now I have been without work for 4 years. I rent a 180sq ft. studio, live alone, had to sell my car to pay rent and traveled a long road of loneliness and isolation. My landlord has only charged me half of the monthly rent for 1 and 1/2 years waiting for my fed. disability hearing.
Why in the world would people choose to think that someone would lie in bed every day after having raised 2 wonderful children, excellent career and had an A type personality? The answer lies in the doctors not validating that an illness existed able to cause this level of
fatigue, therefore causing undue stress.
Now the positive side, I have become stronger as an individual, learned to educate myself about medicine, and learned to always have an open heart when someone looks homeless, ill, or just needs help.
Anyone else felt like this?
Marina
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2625490/
I do like to be positive most of the time but I also think it helps to share the struggles as well. On March 30, 2009 I left a job on temporary disability because the fatigue was so bad that I couldn't walk or think while waiting on customers as a designer.
I have spent 4 years with friends, family, and doctors thinking that I was faking my ability to work. Surely someone with my abilities can work somewhere they thought. At 57 years old now I have been without work for 4 years. I rent a 180sq ft. studio, live alone, had to sell my car to pay rent and traveled a long road of loneliness and isolation. My landlord has only charged me half of the monthly rent for 1 and 1/2 years waiting for my fed. disability hearing.
Why in the world would people choose to think that someone would lie in bed every day after having raised 2 wonderful children, excellent career and had an A type personality? The answer lies in the doctors not validating that an illness existed able to cause this level of
fatigue, therefore causing undue stress.
Now the positive side, I have become stronger as an individual, learned to educate myself about medicine, and learned to always have an open heart when someone looks homeless, ill, or just needs help.
Anyone else felt like this?
Marina
Dan-What a trial having MG and family financial responsibilities too. I'm sorry your Dad isn't there for you yet!
Koev-the weird comments keep coming every day, I need to think of some funny comebacks. That always throws people off. hehehe
I am thankful we all have the Internet to discuss MG.
Sorry I'm a little slow in responding.
My mother watched two episodes where I was siting right next to her and my neck muscles completely gave out. My head bounced like a rubber ball and all she had to say is, "Well that was weird". With the follow up question, "Why did you do that?". I looked at her with that tilted head (like a curious dog) and said, "I don't know. I didn't CHOOSE to do it. Why would you ask such a mean question?". Of course her response was that she thought that it was something that I was doing, just to goof around. She clearly doesn't know my sense of humor. I had a headache that day, complained that my neck muscles felt wek, etc. and goofing off is the last thing that I would have been doing.
Even now that I have been diagnosed with MG she thinks it's a crock. The funny thing is that when I tell her about the daily struggles she says, "are you going to see the doctor about that?". I've told her time and again that I see my PCP almost monthly and my neuro sees me every day. It goes in one ear and out the other, AND SHE'S A NURSE!!!! Scarey huh?
My husband is incredibly supportive but even he thought that I was just being lazy when all of this started. Now, he believes but only since our doctor started me on Mestinon and he could see the total transformation. Up until that point he was totally frustrated with me and couldn't understand why I couldn't do the things that I used to.
At the time that the symptoms started though, I had a highly physical MA position with a PCP office in N.C. I was also caring for my baby sister before I went to work. She is 3 yrs younger than me and has Cerebral Palsy (CP) requiring total care and she weighed around 110 lbs. I had to physically pick her up to give her a bath or change her diaper, etc. I did it without assistance too. I would get up at 5:30 am and get my nephew ready for school and made sure that he had breakfast AND brushed his teeth (we were raising him at the time as well) then make my way to my mother's apartment about 100 yards away. While I was there I would give my sister a bath, dry her and put her clothes on, dry her hair, brush her teeth give her a g-tube feeding and her meds, sing songs to her and wait for the van to pick her up for her day program. After which I would go back to my apartment, get a shower and prepare for work. Then I'd drive 45 minutes to work which I usually arrived for right around 8:30. I would spend 9-10 hours a day at work and drive all the way back home just to do it all over again the next day. It was a nightmare!! Eventually, I had to stop caring for my sister in the mornings which just broke my heart. It got to the point that I could no longer pick her up without the danger of dropping her and there were a couple of incidents where we both went down so that I would break her fall. I would rather injure myself than her and would certainly give my life for her if I had too. It was just too dangerous for both of us to keep it up but I didn't have a clue what was really going on with me at the time.
As I've said on here before, my symptoms began in 2009 after an anaphylactic reaction to an antibiotic which resulted in pneumonia. I haven't been the same since. It took me almost 4 weeks to rid myself of the pneumonia and I ended up taking a week off of work. I went back to work for one day and took another week off. After that I had no more sick time and had no choice but to work. That's when I was diagnosed with asthma which I never felt was quite right because the inhalers barely helped except to make me jittery.
The worst part for me was waking up in the morning with such breathing difficulty that it scared me to go to sleep. I'd wake up gasping for air but couldn't inhale. My lungs just didn't want to work. I went to the urgent care at Duke University twice. They did chest x-rays, etc and said that nothing was wrong with me. Another time I had an average cold but it sucked the life right out of me for about a month. Since I wasn't getting any better I went to the ER. I explained that I had been in the shower that morning getting ready for work but I got so weak that I passed out and my husband had to drag me out of the shower and put me in bed, where I laid there shaking and could hardly breathe. I told them how weak I was and that all I could do was sleep. I told him about the muscle loss in my thighs and how I'd been trying to get back into running and he said that I was getting too old to "get back into that". I was 37 or 38 at the time. I was so furious. I left with a diagnosis of dehydration and "viral syndrome". One other time I went to an urgent care that I worked at briefly, (they were also the ones that diagnosed me with the pneumonia when that happened) and the doctor said he really had no idea what was happening to me. It went on like that until 2012 when I met our "hero doctor", as you put it.
I count my blessings every day that he came into my life. I don't know where I'd be without him.
The funny thing is that my mainland PCP and my PCP here both believed me when I explained my symptoms. It's just that they didn't know what it was. My family and friends (certain ones anyway) said that it was all in my head but they never did. It still felt that way though.
I'm glad that you found us (me and Dr. L). You can message me anytime or feel free to call the office and ask for me. Even if you have to leave a message on my voice mail, I will call you back if I'm in the office.
Aloha to you all!
Marina
Definitely one of the stories she loved to re-tell. I think her humor has played a big part in my survival skills after she passed away. I couldn't help but think of that when your Mom said "Well that was weird!" They definitely thought & think we are invincible. I know we aren't and I will be here for you as well!
I had seizures as a toddler which were not related to fever. It was always felt that they had something to do with a severe head injury when I was super young. I do have to wonder now if there was a link of some kind, but who knows?
Love the story about your mom. Sounds like she had a wonderful sense of humor.
I went to the emergency room last night because my breathing is getting shallow and my heart had been racing on and off all day.
All tests came back "normal", oxygen levels, heart rate..... The only thing that they were concerned about is when they had me blow into the asthma tube thing....I barely got it to move. They gave a breathing treatment and no change. Waited over 2 hours for my Neuro to answer a page. Not sure if he ever did...I got dressed , made them remove the IV and walked out. I will now get copies of my bloodwork, emg, ncv and find another Dr.
Just wanted to ask anyone if they have tried chelated maganese? Or increased doses (5000 iu) of vitamin d3?
I bet now you are learning how difficult forgiveness is.
So sorry for your struggle.
For some of us...a crisis is a blessing. When your family sees you on a respirator they believe you.
Take care.
Tell him thanks from someone he doesn't even know.
I feel very thankful my children are older and can take care of themselves. I am also extremely lucky to have my parents support. I'm not sure they always understand, but they're always supportive. My parents supported me financially after I had to quit work. The still pay my rent an I live off of my SS checks. I take one day at a time and make sure to enjoy my sparkle days.
Take care
Michele