Wednesday, September 18, 2013

Can you die from myasthenia gravis?

People have been asking me, "Can you die from myasthenia gravis?" Most of these people are surfing the internet at 3:19 in the morning. They were just diagnosed with MG and are looking for someone who knows what they are going through. If this is you, make yourself a cup of cocoa and have a seat. I've had MG for 15 years. I'm still here. In 15 years chances are you'll still be here, too. Here's a hug.

The answer to the question, "Can you die from myasthenia gravis?" is yes, but probably not. It's the same answer to the question, "Can you die from driving on the freeway?" Yes, but probably not.

The four ways myasthenia gravis can be fatal are:

1.) Severe respiratory weakness
2.) Choking
3.) Falls
4.) Medication side-effects

Because people are asking about it, I'll be blogging about these one at a time over the next few days. Let's start with the scary one: respiratory failure.

Severe respiratory weakness in myasthenia gravis can happen. This is called a myasthenic crisis and it can be deadly without treatment. A crisis happens when MG attacks the muscles involved in breathing. It feels like someone covered your mouth and nose with their hand and you just can't breathe in.

My last crisis was in 2005. I blacked out while practicing the cello. Darn you Popper Etude Number 36! That piece of music is one of the funnest things to play on the cello, but I got out of breath playing it. I'm lucky I didn't drop my cello.

I was so weak I couldn't cry out that I needed help. I couldn't walk from the practice room to the living room, so I crawled. My family called an ambulance and I spent a few days in the hospital. It was no fun at all.

But, my crisis didn't come out of nowhere. In the weeks leading up to it, my MG symptoms increased dramatically. Only, I was too dumb to know where I was headed. MG symptoms fluctuate. Some days are better than others. What I learned to look for was a pattern. Bad days, followed by worse days, followed by bedridden days, are something I pay attention to. If MG is sliding, I take that as a warning sign.

What causes a crisis? Infections can trigger them, especially respiratory infections. Coughing makes chest muscles weaker. So do fevers. Hot weather can weaken muscles. Surgery, trauma (including emotional trauma) can weaken breathing muscles.

If you are afraid of a crisis, and can't sleep right now, here's a suggestion. Learn how MG "normally" feels in your body, so you can know if something changed. You don't have to be paranoid, but aware. Think of monitoring your MG like monitoring your driving on a freeway. You know how the freeway is supposed to feel. But, sometimes there is bad weather, or that crazy person texting, or that lunatic in the truck. Signaling left and getting into the right lane? Are you insane? Driving closer to me doesn't make my car go faster, you know. What are you a snow plow? Get off my tail, buddy. Look at this guy. The long thin pedal is the accelerator you jerk! The brake pedal is not the clutch. Quit riding it. Hey you, with the bumper sticker, forget world peace. Visualize using your turn signal! That it'd be the change I wish to see in the world.

Wait. What were we talking about? Oh yeah. Sorry. Tangent got lose again. Here Tangent. Here boy. Back into your kennel. Good Tangent.

Ahem.

With MG you know how you feel on a "normal" day. If you feel worse than you have ever felt, if breathing feels like someone stuck a plastic bag over your face, if you feel like crawling instead of walking, call an ambulance. Don't, ahem, ignore all this and do something dumb like, oh I dunno... practice the cello. Darn you Popper No. 36.


28 comments:

  1. Thank u for this info. I am 13 and I am still suffering mg. My doctors keep telling that I could die because my weakness is going out or control.

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    1. I am so sorry to hear this. Please see your doctor soon and see if there is medication to help you feel stronger. You can keep in touch with me here or email me. thecellochick (@) gmail.com

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    2. Nowadays, there is so much medications available that wasn't available decades ago. My father's mother died when she was 26 in 1939 when my dad was six years old. But that was 1939. You must have a positive attitude, visit your doctors and take all medications on time during the day. I wish you the very best. Please know that other people go through health difficulties at all ages. Try to seek out a support group...online...so that you are not alone. Take care and be the best you can be.

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    3. My mother was diagnosed in 1973 and ended up living til 1996. obviously medications and treatments werent the same back then. Wish they were. So have hope and faith. You unfortunately learn to live within your boundaries,

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    4. My mother was diagnosed in 2000, & she just passed away 2 months ago. She had it for 16 years. She suffered so much. & the doctors said she died because of the long term affects the medications have.

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  2. I have a 3 year old who may be suffering from this, She's seen 3 doctors today and 2 out of 3 suggest Mg.Now we are being referred to a neurology, I really hope she doesn't have it.

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  3. My father has mg for about 3 years now every hardheaded. i want him to see a specialist but he is so against it. he has let it take over his life. i hope it will change. the meds work sometimes and doesnt other times. he was a strong man no meds until mg.

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  4. I use the "single breath count test" to decide if I need to go to the ER, especially since the fear of having to go the ER can make it FEEL like I'm breathing worse than I really am. With the test, you take the deepest breath you can, and then try to count to 50 at a fast but understandable pace, at a normal speaking tone. If you can't even make it to 20 without dipping into whispering or whatever, then you aren't getting enough air into your lungs at your current strength. If I just FEEL breathless, then I can pass the test no problem.

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    1. I use this same technique, too. It can calm me down. I hate the ER because they never see MG and just have no idea what to do, so I end up being breathless and having to explain it. So frustrating.

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  5. Hello my son is 14 and have this same disease and currently taking infusions and medications, he is suffering with high blood pressure as well. Can you please email me at brandiiwhitley@yahoo.com so that we can share more information

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  6. I had a myasthenic crisis in June 2015. This was my first symptom of Mg. Uncontrollable bowels, inability to shower by myself, and often inability to get out of bed just to pour myself a glass of water. This is the worst thing that could ever happen to me.. it is very important to pay attention to your body. If you get out of breath walking from your home to your car, call your doctor. Don't wait until you are breathless and cannot count to 20

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  7. I had a myasthenic crisis in June 2015. This was my first symptom of Mg. Uncontrollable bowels, inability to shower by myself, and often inability to get out of bed just to pour myself a glass of water. This is the worst thing that could ever happen to me.. it is very important to pay attention to your body. If you get out of breath walking from your home to your car, call your doctor. Don't wait until you are breathless and cannot count to 20

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  8. For all who have this please pay attention to your body. It gives u signals. Take your medication as your dr. Tells you. I have an aunt who is in crisis right now. It's hard to see a person go through this, very hard.

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  9. For all who have this please pay attention to your body. It gives u signals. Take your medication as your dr. Tells you. I have an aunt who is in crisis right now. It's hard to see a person go through this, very hard.

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  10. I am 47 single and live with my little chug pepper. I have been undiagnosed until a year ago with MG. I have tried the imuniglobin and mastinon with terrible results. Infusions seemed to make it worse and I was prescribed an overdose of Mastinon that made my arms legs and abs jerk uncontrollably all night. When contacting my neurologist it took them 9 days to respond. I now have trouble talking, swallowing or curling my tounge at all. I am embarrassed to eat in public or even meet new people because of how I sound when I talk to long at a time. As much as I love my little dog I am concidering finding her a good home because if I do have a crisis I'm not so sure I would even call 911. My quality of life has bottomed out and I'm tired just so tired of my family thinking I'm just lazy and making fun of the way I talk behind my back thinking I don't know ofcourse. 15 years. WOW!! You must really have people that care about you a lot. Good for you.

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    1. Robert, you need a better neurologist! Mestinon does cause muscle spasms in some people. There are better medications that can make a huge difference for you. I hope you find the right one.

      As far as your family goes, I have written an open letter to family members. Here's the link. I hope it helps. http://www.joybenchmarks.com/2013/02/an-open-letter-about-myasthenia-gravis.html

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    2. Thank you for your response Marie. I have seen two different neurologists. I'm not sure it's appropriate to mention names but the first one prescribed the Mestinon and did not return my call for 9 days. The second prescribed the 5 eight hour days of imuniglobin infusions and his staff after making me wait for a month and a half for my part B medicare to take effect scheduled me one day before it did then after my appointment asked me to make a $400.00 payment I could not afford on $650.00 a month disability. I feel at the end of my rope and am dealing with diabetes issues as well. I used to weigh 420 lbs.and have agaist great odds managed to get down to 226 lbs. On top of myasthenia gravis have a heat and stress allergy called choalergic urticaria and break out in a red velvet rash when I get anxiety or even sweat. Try exercising and losing 200 lbs. Dealing with that. I. Have not drank any alchohol in over 5 years now and have accomplished a great deal. I feel I just have no fight left in me. No matter what goal I accomplish there seem to be 5 more they expect of me. To what end? It seems MG has extinguished the light at the end of my tunnel. I can't talk right... I can't eat right... and I'm so weak all the time. I'm really not one of those crazies looking for pitty.. I'm angry! This is the first time I've really reached out for some real advise from someone that understands what I'm going through. I'm only so strong. And I am strong but just so tired.
      Thank you for listening.

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    3. I've never had IVIG. Too EXPENSIVE, no thank you. I rely on methotrexate. It works. It's cheap. Did I mention it's cheap? Generic. 29 bucks a month full price at Walmart. My copay is 15 bucks. I take a handful of weekly pills, bye bye horrible MG. Imuran is another drug that helps people. Cellcept is another. DO NOT GIVE UP. DO NOT GIVE IN! Demand treatment. You are a human being who is valuable and matters. Myasthenia Gravis is one of the diseases under the Muscular Dystrophy Association umbrella. Call them and ask for a neurologist consult. You can get help. I know it.

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    4. Thank you so much Marie.. it means a whole lot to hear those words "Don't give up" I know people read this and smirk but when you are under fire and someone grabs your arm to help you back to your feet and out of harms way it is worth more than you may think. I will ask about that medication as well. God bless you my froend :)

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  11. Hi Marie,

    I've been going through much of what Robert has gone through and am frustrated to exhaustion about the ER and hospitals inability to diagnose me, yet a new psychiatrist and PCP was able to make the guess. 1/14/16 got my first scare thinking I was having a stroke. 5/24/16, over 4 months am still not diagnosed yet have spot on symptoms spiraling downward. Only medication is anxiety meds so far. Have gutted it out so far with many crying fits at night and day. Can't eat without throat choking up and faint feeling anymore. Chewing is worse and drinking is rough. I've got an appointment at neuromuscular Doctor on June 2. At this point not optimistic about waiting 2-4 weeks for every appointment set.
    With 7 trips to ER, 2 hospitalizations and dozens of dr visits in between, they all say depression. I wish that I could put my issues into a dr just to let them feel the misery I'm going through. Since the 1st incident, 2 weeks later, the muscle weakness started, along with more panic attacks. Breathing got difficult with everything I tried to do. Muscles got tired and took hours to recover from lifting a water bottle. Now it's to a point it takes days to recover and been having spasms with my insides too. Twitching has become very consistent. I'm only 46, and my Dad & Wife are running around taking care of my needs. How hopeless can one feel? The IVIG method sounded good and Plasmapheresis machine sounded really good if insurance would pay, yet like you said, they don't know how to diagnose MG. Pretty much diagnosed myself.
    What do I need to do ?

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    1. You need to see that neuromuscular doc. You need to remember to breathe. There is nothing more painful than being told a physical condition is all in your head. It's sloppy and ridiculous for doctors to do this without first pursuing other options. My heart hurts for you.

      I hope the doctor you see runs a Tensilon test. It is a diagnostic test that is obvious as a stop light if you have MG. Insist on having one done.

      It is normal to be stressed out when you feel horrible and don't know why. Please keep me posted, either here or at my email address, thecellochick@gmail(dot)com Sorry for writing that weird, but robot spam is not my friend.

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  12. I'm elderly, in my seventies, but I suspect I've had MG fir the past 10 years. Now I'm fighting to be diagnosed. I am very breathless, cannot talk properly (dysarthria) so nobody can understand me. I have camptocormia which follows myasthenia, Very tired and now my right eyelid is dropping, especially when I'm tired. I've seen one neuro when I was hospitalised a few months ago but my blood test and EMG were negative. Lately, I've been choking on food and swallowing hard, so my doctor prescribed liquid food for me. Yet no diagnosis. My doctor is writing to the neuro to see me urgently. Yes, I recently saw another neuro privately, who said if my EMG comes back normal, then my symptoms must be psychomatic!! I'm at my wits end. I am fighting for survival but I feel myasthenia will kill me before I get treated. In desperation I was thinking of treating myself with mestinon tablets but they are very expensive.

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    1. will pray for you dear Linda.. Hope you doing well now

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  13. Thank you for posting this. I needed to read this tonight. Thank you.

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  14. I posted about a month ago. The swallowing has worsened in that liquid comes down through my nose. Spend most days in bed as my legs feel like lead and my calves ache all the time. I find the resting very helpful in controlling the illness, but if I try to, say, tidy up a room, the next day is horrible for me. I have a wonderful husband of 53 years who cares for me. My own doctor now thinks I have MG and I have written to him asking to be referred to a Myasthenia Clinic. You know, folks, i really wish my illness was pyschomatic then I could take some medication which a psychiatrist would prescribe and get better. I could enjoy my life and go out again. I do meditation and relaxation every day, which helps me to sleep peacefully. Ive tried telling myself to pull myself together but I just continue to worsen. I forced myself to do some gentle exercise, just walking around with my sticks indoors. The result was 3 or 4 days in bed with my oxygen mask on. I will persevere and get to the myasthenia clinic who will be able to tell me whether I have MG. if not, hallelujah. That's how desperate I am not to have this horrible illness.

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  15. Hello...my mother suffers from MG and I just wanted to let everyone know that the Muscular Disthropy Association (MDA) treats MG for free on patients who can't pay. They care for my Mom. God bless all those suffering 🙏🏻

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  16. Just found out that my husband suffering from MG, it hurt my heart to hear

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Disclaimer

I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

If you are enrolled with your own major at the University of Catastrophe, please consult your doctor, therapist, attorney, auto mechanic, veterinarian, plumber, dietician, arborist, acupuncturist, manicurist, mother, local dairy council, shoe shine boy, or other equally qualified professional, for advice and assistance.

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