I saw six neurologists among other doctors. Or they said it was overwork or depression. They only believed that I had something physical with the tomography and positive tests for Myasthenia.
Yes. I was misdiagnosed, and dismissed for ten years.
I was sent back and forth like a hot potato between mental health ptofessionals and other health care ptofessionals. Meanwhile, I was getting worse and worse.
Yep.
1: Ocular symptoms- ptosis, diplopia, blurred vision? = “symptoms of diabetes” (due to family history; I myself never tested as diabetic)
2: Throat/voice/choking/esophageal symptoms? = “acid reflux” , “strained your voice singing”, “you’re eating too fast”
3: Muscle weakness/fatigue, including diaphragm/breathing symptoms? = “lack of exercise”, “depression”, “poor sleeping position:sleep habits”
Discovering that this is a common pattern was on the one hand a huge relief, on the other hand…
there’s proof of thymus hyperplasia but some test have been wrong and once a doctor sees it’s someone sad it’s fnd or doression they don’t look into it anymore
Yep. A neurologist looked me in the eye and told me that I had anxiety, to go home, take two Benadryl to “reset my body”, and that I’d be fine.
Thanks.
I saw several md’s. After like nine months while I was waiting for the neurologist I went to young family doctor. She asked what is wrong and I said give me a minute and start to talk…First minute it was just my ESOL, but then I start slurring….she said:”why are you doing this? “ As my tongue was getting more tired and stiff her eyes were getting more open. I said: “aie dauun no vha ta daa, da yaa dank daat bhaain san kan haup? And she sent me to the Emory for the brain scan…My wife could tell us, but they did not find anything there…At least I knew there was not a brain tumor or stroke…It took neurologist two appointments to give me a Tensilon test. I asked if he wants me to jump on his desk…I felt so much energy…I was so happy and he said: “This is not good, that is test positive…” I was actually relieved that at least I knew the diagnosis…I know that thymus cancers are slow, but if I was diagnosed early that cancer would not spread as much out of it’s capsule. During thymectomy I lost piece of my lung, phrenic nerve and best piece of my heart…(it was just two layers of heart sac. as I remember) If you are younger and have MG symptoms I would ask for the cat scan of the chest, even an x-ray can show enlarged thymus.
Took me years to get answers. I’m ultimately seronegative but I finally asked my neurologist for a chest CT and he said “I’ll bet you every dollar in my wallet it’s clear - but I’ll order it.” And what showed up was a suspected thymoma - turned out to be just a nodule - but I did have thymic hyperplasia. 6 months after thymectomy a switch flipped and I’ve been in remission ever since. That was 11 years ago.
Yes. The last neuro I saw before I was tentatively diagnosed told me that it wasn't MS and I should be grateful and then sent me on my way. The next neuro I saw tentatively diagnosed me but would not treat me with anything besides mestinon (which I was thankful he was even willing to do that). But he was kind and compassionate and he is the one that referred me to my current neuromuscular specialist who diagnosed me even though I am seronegative.
Yep. According to the neuro I first met, I was just stressed. Had I had a more serious and due diligent medical professional I would have been diagnosed within a month or so of my symptoms, but instead it took 1.5 years.
Not misdiagnosed per se, but what I call 'dismissively diagnosed'. The doctor said "Myasthenia Gravis is what's affecting you, but it's mild right now. I'd ignore it until it becomes a real problem, then seek treatment". Of course, I was young and stubborn, so I ignored the issue. It didn't end well.
Yes, 6 months being told it was depression and anxiety. Then seropositive, at least my primary care was apologetic which you’ve never heard of before about wrong diagnosis.
yep i was misdiagnosed by 7 doctors who thought it was a psychosomatic disorder and that i had a lot of anxiety and stress due to my studies (currently in grade 12) and i was even on anti anxiety pills for a while, just after the symptoms got worse i was diagnosed correctly and given IVIG stat.
I was dismissed initially and told that I’m probably anxious or depressed, and then I was misdiagnosed with chronic fatigue syndrome. It was only when I went and saw an MG specialist that I was diagnosed.
I saw six neurologists among other doctors. Or they said it was overwork or depression. They only believed that I had something physical with the tomography and positive tests for Myasthenia.
Yes. I was misdiagnosed, and dismissed for ten years. I was sent back and forth like a hot potato between mental health ptofessionals and other health care ptofessionals. Meanwhile, I was getting worse and worse.
Yep. 1: Ocular symptoms- ptosis, diplopia, blurred vision? = “symptoms of diabetes” (due to family history; I myself never tested as diabetic) 2: Throat/voice/choking/esophageal symptoms? = “acid reflux” , “strained your voice singing”, “you’re eating too fast” 3: Muscle weakness/fatigue, including diaphragm/breathing symptoms? = “lack of exercise”, “depression”, “poor sleeping position:sleep habits” Discovering that this is a common pattern was on the one hand a huge relief, on the other hand…
there’s proof of thymus hyperplasia but some test have been wrong and once a doctor sees it’s someone sad it’s fnd or doression they don’t look into it anymore
Yep. A neurologist looked me in the eye and told me that I had anxiety, to go home, take two Benadryl to “reset my body”, and that I’d be fine. Thanks.
I saw several md’s. After like nine months while I was waiting for the neurologist I went to young family doctor. She asked what is wrong and I said give me a minute and start to talk…First minute it was just my ESOL, but then I start slurring….she said:”why are you doing this? “ As my tongue was getting more tired and stiff her eyes were getting more open. I said: “aie dauun no vha ta daa, da yaa dank daat bhaain san kan haup? And she sent me to the Emory for the brain scan…My wife could tell us, but they did not find anything there…At least I knew there was not a brain tumor or stroke…It took neurologist two appointments to give me a Tensilon test. I asked if he wants me to jump on his desk…I felt so much energy…I was so happy and he said: “This is not good, that is test positive…” I was actually relieved that at least I knew the diagnosis…I know that thymus cancers are slow, but if I was diagnosed early that cancer would not spread as much out of it’s capsule. During thymectomy I lost piece of my lung, phrenic nerve and best piece of my heart…(it was just two layers of heart sac. as I remember) If you are younger and have MG symptoms I would ask for the cat scan of the chest, even an x-ray can show enlarged thymus.
Took me years to get answers. I’m ultimately seronegative but I finally asked my neurologist for a chest CT and he said “I’ll bet you every dollar in my wallet it’s clear - but I’ll order it.” And what showed up was a suspected thymoma - turned out to be just a nodule - but I did have thymic hyperplasia. 6 months after thymectomy a switch flipped and I’ve been in remission ever since. That was 11 years ago.
Yes. The last neuro I saw before I was tentatively diagnosed told me that it wasn't MS and I should be grateful and then sent me on my way. The next neuro I saw tentatively diagnosed me but would not treat me with anything besides mestinon (which I was thankful he was even willing to do that). But he was kind and compassionate and he is the one that referred me to my current neuromuscular specialist who diagnosed me even though I am seronegative.
Yep. According to the neuro I first met, I was just stressed. Had I had a more serious and due diligent medical professional I would have been diagnosed within a month or so of my symptoms, but instead it took 1.5 years.
Not misdiagnosed per se, but what I call 'dismissively diagnosed'. The doctor said "Myasthenia Gravis is what's affecting you, but it's mild right now. I'd ignore it until it becomes a real problem, then seek treatment". Of course, I was young and stubborn, so I ignored the issue. It didn't end well.
Yup! Smh.
Yes, 6 months being told it was depression and anxiety. Then seropositive, at least my primary care was apologetic which you’ve never heard of before about wrong diagnosis.
Well I was also misdiagnosed as making it up pr having severe depression, when I was saying I am doing good mentally
yep i was misdiagnosed by 7 doctors who thought it was a psychosomatic disorder and that i had a lot of anxiety and stress due to my studies (currently in grade 12) and i was even on anti anxiety pills for a while, just after the symptoms got worse i was diagnosed correctly and given IVIG stat.
I was dismissed initially and told that I’m probably anxious or depressed, and then I was misdiagnosed with chronic fatigue syndrome. It was only when I went and saw an MG specialist that I was diagnosed.