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Describe Your Journey With MG in 3 Words
Myasthenia gravis is a unique illness. All of us living with MG have varying illness experiences. I have dealt with frustration, feeling like the odds are stacked against me often, and I have also been very grateful for the lessons MG has taught me young. So I would describe my journey living with MG as illuminating, demanding, and rewarding.
How would you describe your perspective of life with MG in 3 words?
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28 Replies
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surprise — I had no idea what would cause ptosis and diplopia
relief — there was a definite diagnosis and a definite treatment
accommodation — life’s a bit different now, but not bad at all
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One continuous hell.
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Complete total frustration .
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I am newly diagnosed with MG at age 67.
Again, I Go!
I have or have had in the past psoriasis, Reynauds, Hashimotos, Crohns, Antiphospholipid syndrome, Lupus, Sjogrens and CREST. Some have come and gone and not come back, but the majority is still here. My mom has MS, my grandmother had pernicious anemia and my aunt had Graves’ disease. We are all of Scandinavian decent.
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Surprise, hang on
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You would think it would be like Ground Hog Day ( Thew Movie).Surprise!!!!
Is it my Eyes
My Voice/
Swallowing,Chewing my mouth up,!!!!! Oh, it’s all of them.
I wish we could wake up, look at the clear glass of Energy next to the bed, and see how much energy I will have for the day, or just the next few hours. -
Could Be Worse.
My condition is fairly mild compared to other’s issues I’ve read here. I had to retire a few years early because of MG. A year before MG, I was diagnosed with Achalasia. My esophagus was too weak to allow me to swallow. I’m convinced that the Achalasia was the result of having MG. Surgery (myotomy) corrected that problem.
I do have some limitations with having MG. Many others suffer much more with this illness & other illnesses. My Journey Could Be Worse.
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Depression (This is horrible, I can hardly function.)
Hope (There are treatments, maybe they will help.)
Improvement (The treatment, mainly prednisone, worked.) -
every day different
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Plasmapheresis miracle.
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Tiredness, almost always, sometimes it’s overwhelming
Vision, I long for an end to my blurry vision
Depression, I long for my life as it used to be.
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Always. Frickin. Tired.
My wife sleeps for a long time and wakes up exhausted. That is problematic. Our planned activities frequently change due to last minute decisions based on energy.
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The new me. That is what my Neurologist tells me. I don’t like that, but it does seem that way. I hate having my body react to the Prednisone but making my skin with blood spots and the haven so easily. Today my foot got a large bruise (as it appears) and just from walking. Life does suck a lot at times. My worst problem seems to be the twitching of my eyes and cramps. Don’t know what else to do.
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The new me. That is what my Neurologist tells me. I don’t like that, but it does seem that way. I hate having my body react to the Prednisone but making my skin with blood spots and the haven so easily. Today my foot got a large bruise (as it appears) and just from walking. Life does suck a lot at times. My worst problem seems to be the twitching of my eyes and cramps. Don’t know what else to do.
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For me … saying only three words is about IMPOSSIBLE … but I am in remission now, after eight months and five months in five hospitals ….. searching for a reason for my 8 or 9 symptoms, and getting the REAL TESTS and treatment finally.
Not a single doctor who saw me or tested me could diagnose me. I was finally diagnosed by a third floor nurse at the second of five hospitals. She wrote in reply to seeing my trying to overcome my hospital bed problems and writing my symptoms on a paper pad…… 100% speech and hearing loss from hospitals for 4 months … due to antibiotics OTOTOXICITY and they slit my throat and chest for a trach and a peg .. when they could not diagnose why I had the issues … but their three neurologists at the first hospital did not know about MG .. The nurse at the second hospital, wrote “I KNOW EXACTLY WHAT YOU HAVE. WE HAVE PATIENTS RIGHT HERE IN THIS HOSPITAL THAT HAVE YOUR SYMPTOMS. YOU HAVE MG !!”
my three words are ….
DOCTORS MG CLUELESS
because not a single doctor could figure it out, now I am in REMISSION from medically induced DIABETES II, due to overdoses of Statins and the NASTY STEROID PREDNISONE that was tapered and killed.
I am in REMISSION from ACUTE OCULAR and GENERALIZED MYASTHENIA GRAVIS since CHRISTMAS 2020 and from MEDICALLY INDUCED DIABETES II and getting shot up with Lantus products since 10-25-2021. So NOW, my three words are ….
REMISSION ME AGAIN ….. and a sidebar TAKE MEDS RELIGIOUSLY
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Didn’t plan this.
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Walking through mud.
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Swimming through treacle.
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Patience- stay as calm and optimistic than ever.
Endurance- don’t give up, there’s help
Love- it bears all things, believes all things, hopes all things, endures all things, love never fails.
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What (had never heard of it)
Hope (that I could live that normal life)
Resignation (that my life will never be normal, made adjustments and am making my life as good as possible.)
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Soliris Saved Me!
I was first diagnosed with MG about 22 years ago by a wonderful ER physician. I was found at that time to have a thymoma which was removed. Did pretty well for many years, and quite ably worked full-time in my equine veterinarian career, then had an acute exaccerbation in late September of 2010 and was hospitalized for several days and was started on Human IgG which was only a little helpful. I went for a few months being very weak, had constant double vision but eventually returned to work. I was moderately disabled but for the most part could still function as a horse doctor. Immunosuppressives worked well for awhile then I would get quite symptomatic again and was switched to others as needed. Contantly, along with the various immununosupressives, I was on daily predisone for many years. I’d have my ups and downs but was mostly still able to do my job.
Then in the fall of 2018 things went totally south. I got weaker and weaker. The docs initially doubled my prednisone, then doubled again and again, twice biweekly before eventually switching to a high dose of dexamethasone. Soon therafter I was a total wreck. I couldn’t stand without assistace and became wheelchair bound and just continued to get weaker and weaker. In mid-November 2018 my gut ruptured (in my opinion caused by the long-term corticosteroids) and I received a gut resection and colostomy bag. Yuck, but eventually got all put back together.
Initially, during my long hospitalization the doctors decided that my severe MG exaccerbation was proof that my immunosuppressive, Tacrolimus at that time, just wasn’t working and so it was stopped and I was given MANY infusions of human IgG which I believed hardly worked at all. Still continued on prednisone, as well! I continued getting weaker and finally couldn’t even roll myself over in bed and certainly couldn’t sit myself up or walk. I was 100% bed-ridden for over a month.
Finally the doctors had a big meeting and decided that I had a rare “steroid myopathy” not just MG. Great. They said I ‘might’ gradually recover from the steroid myopathy. After all those years of prednisone my adrenals were nonfunctional so the prednisone couldn’t just be suddenly stopped.
Fortunately I recovered oh so slowly into early 2019. My only MG treatment was Mestinon and regular IgG infusions. I was unable to walk for many weaks and was in a wheelchair. Then in April things headed south again as my MG exaccerbated gradually but surely and I was referred to the university hospital. They started plasmaphoresis and though helpful I ended up being on a respirator for a few weeks. Afyerveventually returning home, my primary treatment became biweekly plasmaphoresis and lots of Mestinon. It was helpful but I was still FAR from normal. After many frustrating months I was finally able to walk with a walker and started driving again but still pretty remained disabled and unable to work.
Then in early 2020 my 7th Neurologist told me about Soliris. Because nothing else had worked, my Medicare and supplementary insurance agreed to its use. Within just a few weeks after starting it, Wow!
I will tell you that Soliris has given me a normal and fantastic life. With no other meds I am 99.5% MG free. I am now a very vital (70 yr old) horse doctor, once again! Full-time work is no sweat.
My friends were once uncomfortably saying good-bye. My family was figuring out what to do with my estate. But nowI can doing anything!
Thank you to God, my wife, and SOLIRIS! LIFE IS GREAT AGAIN.
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It is so great that you are alive and “ME AGAIN” … as I keep saying to myself. I guess is so TRUE about MG being a snowflake disease. Everyone’s issues and meds are so different. I am sure the horses are happy that you are back in service. I turned 72 in June 2023 … and PREDNISONE almost did me in. They gave me doses of PREDNISONE, while other doctors were dumping STATINS in me … so I got MEDICALLY INDUCED DIABETES II suddenly … and they were shooting me up at least twice a day with LANTUS products. But once they tapered and KILLED PREDNISONE … the new doctor tapered and killed all those shots … so I am mainly on CELLCEPT and MESTINON to stay alive. My cousins homestead in Winthrop Iowa … and they started with heavy DRAFT HORSES for plowing …. before they got tractors … so RONALD COLLINS had one of his DRAFTS called DIAMOND studding out all over the county. Now the DRAFTS have all passed away … so they are into riding horses for parades and leisure exercise … including one called TOM COLLINS. SO THANKS FOR YOUR VET SERVICES TO YOUR EQUINE FRIENDS …..
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Roller coaster ride😎
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Treat With Respect – this was said to me during my first consultant appointment. I did not do this and though I had trouble swallowing, slurred speech it did improved= with rest. I refused all treatment feeling sure I would get over this and not have major problems. I found a new live in job, but after 6 weeks I could hardly hold my head up, only just eat, could hardly raise my arms over a certain level and my speech slurred. Then caught swine flu in this state and was rushed to ITU and could not breath. I was sedated for a week and after 2 weeks released into a ward and spent 4 months in hospital and 18 months with a naso gastric tube and then 6 months with PEG tube, mostly due to avoiding strong medication and not realising they take time to work. It was 3 years before I was stabilized and 3 visits to ITU in deep MG crisis, all my own fault to an extent. Now they want me to change my medication due to side affect, so the dilemmas go on. Do I change when I am reasonably stable and it all goes horribly wrong, or do I hope for the best and the new the medication is better than the current, but they all have similar side affects……. !!!
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Prednisone
Overweight
Patience
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Relief: I wasn’t crazy. There was a diagnosis for my weakness. <div><div>
Scared: What would my future be like.
Blessed: I seem to have mild symptoms. And Mestinon helps when I need it
I was also diagnosed with Multiple Sclerosis after going completely blind in my left eye for 30 days. Two muscle diseases, arthritis, but so very blessed.
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whack- a- mole
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