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Misdiagnosis Before MG
When I first started experiencing symptoms of MG, I went from doctor to doctor before I found any answers. One tested me for ALS while another thought a possible tumor in my throat could explain my difficulty with swallowing. Both doctors were wrong.
Were you misdiagnosed with a different disease when you first started to experience MG symptoms? What did your doctors test you for?
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9 Replies
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I was first diagnosed with a mini stroke then sinus infection.
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Double vision was my first symptom. My Opthamologist diagnose me with 4th Nerve Palsy. Before my next appointment with him I was hospitalize with slurred speech and difficulty swallowing and was diagnose with MG by a hospital neurologist.
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I developed unilateral ptosis in December 2020. I saw an ophthalmologist who checked for fatigability. Ptosis thought to be due to dehiscence of the levator aponeurosis from its insertion in the eyelid due to age. Had two operations, no further problems until February this year when ptosis developed on other side. AntiACh receptor antibodies positive. Now on 50mg of prednisolone as pyridostigmine not controlling symptoms. Had to reduce pyridostigmine as had two episodes of cardiac syncope, which in the UK, means that you lose your driving licence for six months. One thing that, as a retired doctor, didn’t want to become is an ‘interesting case’. I am lucky to just have ocular myasthenia and am amazed by the resilience of my fellow posters on this site.
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Of course my symptoms were so sporadic in the beginning that my primary couldn’t elicit the symptoms in the office. She was initially worried for stroke, but I told her I just knew it wasn’t that. ENT was worried for MS and after a clear MRI from ENT, I was sent to a neurologist who immediately diagnosed me based on symptoms. I had so many classic symptoms of MG. Blood test confirmed. All before diagnosis I had shingles and COVID.
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My MG took 3 1/2 months to diagnose starting with blurred vision at the eye doctors, then a specialist eye doctor, then to a respiratory doctor for an upgraded respiratory inhaler for my breathing issues etc. Finally I pretty much diagnosed my self by searching the internet. I was somewhere between MG, ALS, MS, AIDS and a couple other close symptomatic immune symptoms but I was 10 for 10 on MG symptoms and asked my family doctor to refer me to a neurologist. My family doctor had not heard of MG before but agreed a neurologist would be a good start? After multiple MRI’s, Cat scans and blood test, my neurologist narrowed it down to MG and began my Vyvgart treatments 9 months ago. It was a very tough three months driving back and forth to the doctors with blurry vision and all the other MG symptoms always expecting the worst and hoping for the best outcome .. I may be getting off track but mine also came on shortly after my first Covid shot but that’s another rabbit trail. In short I hope technology gets better at diagnosing and preventing diseases such as MG and Hope even more that they find a permanent cure soon…
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Hi It took me over years before I was diagnose My main symptom was issues with breathing and heart flutters. I do have to say Mark if your family doctor has not heard of MG I think I would get a different doctor (my opinion) but I digress. I think I have been on just about every med for MG am now going to start Ultomiris soon I’m on Soliris now.
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Did they take a blood test and did it show you had MG?
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Yes, it took multiple blood test to finally narrow my diagnosis down to MG… Along with cat scans, multiple MRI’s to isolate possibilities of damaged eye muscle issues, Thymus and other diagnosis possibilities. Just a note of interest when I went to the second eye specialist for blurry vision, he let me know that he couldn’t find anything in the eye exams or MRI’s to cause my blurry vision but did ask if I had any Thymus issues… ? Of course I didn’t know what the thymus was at the time and asked what does that have to do with my blurry vision? He replied with awe just wondering. After being diagnosed for MG, I went back to him months later for prism glasses for my double vision, I asked him if he suspected MG and was and the reasoning for asking me about my Thymus… He said yes, I suspected MG or something similar but I’m just an eye doctor and it’s not my place to scare patients by diagnosing issues outside of my field…?
But as to your question, there seems to be many close illnesses similar to MG and a series of test to accurately isolate each down to MG but the last two of many blood test were the final contributors to my diagnosis… Hope that helps a little as everyones body and their doctors approach to MG may be different.
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I was very lucky in that I got diagnosed very quickly. One Saturday morning I was driving with a friend in my truck, my eyelids kept falling. I wasn’t falling asleep since we were conversing. Monday, I scheduled an appointment with my primary care doctor. Later that week, at my appointment, I explained that several months earlier I took my wife out for a nice dinner and could only eat 1/2 of my steak, my jaws got tired. Then a month later we went out for a Sunday brunch at a fried chicken buffet, I could hardly chew the chicken. Then I told him about the eyelids and he just said “Myasthenia Gravis “. My response was “back at ya doc.” He had seen two patients when he was an intern that had MG. The blood test confirmed his diagnosis.
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