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Myasthenia Gravis Diagnosis Timeline
What was the timeline of your MG diagnosis? What symptoms did you experience and for how long before you attempted to receive a diagnosis and from the time you heard the words “Myasthenia gravis?”
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20 Replies
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Took 8 visits to doctors over 3 months before I got the confirmed diagnosis of MG. Symptoms from the start were double vision and trouble focusing.
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Suddenly five years ago my jaws got easily tired when doing a lot of chewing, my speech sounded a little drunk when talking for any length of time and my left eyelid drooped a bit. My wife (Dr. Google) looked it up and came up with something I never heard of; MG. I went to my primary care the next day and he and I discussed probable causes. He also felt it was most likely MG and referred me to a Neurologist. A positive AChR antibody test confirmed and the rest is history. All told it took less than two weeks before I was on meds (Mestinon and Prednisone). I was one of the lucky ones with a quick diagnosis.
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My timeline was months long and as I reflect on it, I probably had the beginnings of MG years before and just did not recognize the symptoms. All along, my complaint was mostly sinus problems which no one attributed to MG. In the end I was diagnosed by a great Doc who did it over the phone while talking to my surgeon. Tests two days later confirmed that he was spot on. Early symptoms were blurred and double vision with muscle fatigue. No these symptoms are controlled with IVIG and meds. I am not expecting remission and am learning to live with it.
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My gp doctor immediately recommended a neurologist because my eye dropped. But he tested me for Lyme which was negative and did a Ct scan of thymus which showed abnormal spot. Neurologist said MG, tested me for antibodies were positive. Eye dropped mid January and diagnosed March but it took that long to get appointments.
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I was seeing a rheumatologist for years, who told me it was fibromyalgia & arthritis. Every time I went to see her, I was getting worse & worse. I have a hobby farm,& it was getting more & more difficult to do my chores,& working 8 hour days. It was getting to the point that I couldn’t even brush my horse without getting exhausted. Not to mention that work was getting more exhausting. She finally referred me to a neurologist. He did a few simple tests to check my strength, speech & eyes. He also did a blood test, even though I’m one that doesn’t have the antibodies, he told me it was MG. So, I went ALL these years misdiagnosed. I did have to get rid of my animals, because it was just getting too hard to handle the bales of hay & bedding & lugging water & manure.
Where I work, they have really worked with me, so I can keep my job. I can’t do full time, I have dropped down to 3 days a week. -
I was diagnosed with MG after 7+ years of symptoms. It was initially thought that I had classic signs of MG, but my antibodies were negative so that diagnosis wasn’t investigated again for a number of years. My presenting symptom was double vision. I did have limb weakness, but it usually occurred later in the day, so it wasn’t observed by health care providers for quite some time. It was quite a long and winding road to diagnosis and appropriate treatment.
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Symptoms, initially eye droop, and overall fatigue.
began in 2012, then in 2013/2014, I had problems that had to be investigated, leading to an 18 month diagnosis of another rare disease of Neuroendocrine Cancer. Time out for surgery in 2014, then when I did not regain my otherwise prior great health, energy, etc, and the fatigue started getting worse. Up in the morning, shower, dry hair, go to bed as I was exhausted. Shortness of breath, ongoing eye issues. Neuro opthamologist ran the antibody test, negative, did again 2 years later as vision deteriorated. Then my neck was so painful had to hold,d it with my hands. Eventually had 2 discs replaced which I do have spinal disc issues, but now wonder if it was the MG. 2017, again antibody test after going to a rheumatologist, who out me on prednisone, only 5 mg, for mixed connective tissue disease. I do also have positive ANA antibody, centromere antibody, so clearly autoimmune issues, along with other family members.
then in 2018, after seeing every specialist for everything from pulmonary, cardiovascular, etc, etc, and one UCLA neuro saying no way did I have MG, my opthamologist finally sent me to a neurologist who confirmed with single fiber nerve conduction that it is MG. So I’m guessing it took, 9 years of VERY actively searching with multiple specialists as to why my life came to an abrupt halt. I wonder if my body fought the cancer so hard that it induced the MG. Way too long.
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MG Diagnosis Timeline
In April 2017 I had difficulty breathing at work, went to the ER and checked out ok. Blood oxygen level good, chest exray, bloodwork….all good. Back to the ER in July 2017, checked out ok, same as in April. That started my journey to many doctors, wanting an answer to my breathing problem. I was healthy, I was fine, my numbers were good, etc. A pulmonologist said I have an elevated diaphram on my right side, and that is the cause of my breathing issue. Then in March 2020 I had a difficulty swallowing and speaking and continued with ‘losing air’ while talking as I have for three years. I called my brother who was diagnosed with MG several years before (age early 50’s). His only symptoms were swallowing and talking. We never talked about it afterwards as he was doing great on Pyridostigmine three times a day. No other meds or treatment for it. I then went to a neurologist. My bloodwork showed MG (I was 78.5 yrs old when diagnosed). I am taking Prednisone, Pyridostigmine, and monthly IVIG for MG. I feel better than I did a year and a half ago and am thankful. My world is small, I don’t drive, cannot do many things I enjoyed; however, I have benefited greatly in numerous ways from this lifestyle. I have learned to be content.
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I was very lucky, I was diagnosed very quickly. I noticed I had difficulty chewing a nice steak one night. A couple of months later I had a problem chewing fried chicken. Then the big reveal. I had a friend in my truck, we were going to pick up a micro dairy and my eyelids kept dropping. I wasn’t falling asleep since I was talking. The next day I scheduled an appointment with my primary care doctor. At that appointment I told him what had been going on and he told told me “Myasthenia Gravis “. The blood test proved it. He had seen to patients back when he was an intern.
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First symptoms (difficulty bringing food to the back of my mouth) in Nov 18. This persisted during December and I also started to slur speech (not great when you’re the narrator of a work panto – afterwards I couldn’t speak at all). Got fobbed off initially by my GP on first visit. Went back in January and got a referral to a maxo-fallacial specialist as the GP thought it was mechanical. That consulation and scan found nothing, so that specialist referred me to a neurologist who had an MG patient. When he described MG I was pretty certain that’s what it was and blood test and electrical conduction study in Mar 2019 confirmed things. Given that I was a late onset female, I thought that was pretty speedy. Chest CT revealed a whopper thymoma so surgery in Apr 19, revealed cancer, radiotherapy that summer and then a crisis with a month long hospital stay in September followed by 3 plasma exchanges and a second surgery and 18 months of steroids, I’m now “down” to just mycophenolate and a bit of pyridostigmine.
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I probably first exhibited signs of MG when I was 15. I constantly had laryngitis and my PC couldn’t find a cause. When I was 17, I had cancer and received aggressive chemotherapy. My voice issues didn’t return until I was 21. I was a directory assistance operator and if I was tired, I lost my voice. I had to see a doctor to avoid issues at work and went to an ENT. He realized the problem immediately at referred me to a neurologist. Tensilon test was positive but I’m seronegative. That was 40 years ago.
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My husband was pretty much diagnosed within an extremely short time. The eye doctor was concerned at a normal check up about the eye which had just started dripping and immediately referred him to an ophthalmologist neurologist who preliminarily diagnosed him with ocular MG. Being in the pharmaceutical industry by immediately looked for a neurologist for a baseline. Someone who was not just a neurologist but had a high number of MG patients and was very well-versed in it. It took us a month to get that appointment but he did some confirmatory test. We were very blessed I think
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I was having some speech difficulty, Left eye weakness, major weakness in arms & legs and mild double vision. I thought allergies…so went to eye doctor who ruled out eye issues but he suggested MG, which I had never heard of. A couple of days later, my left eye drooped/closed while I was backing out of my driveway and I hit a tree! My daughter first thought I was having a stroke, called my PCP who told me to go to emergency room. I was admitted to hospital, ruled out stroke and Bells Paulsy…but on third day a neurologist ran diagnostic tests for MG and confirmed it. A rare disease in my area!
They began mestinon and athroziaprine which helped improve things then began IVIG which had great results…symptoms became tolerable…that was 5 years ago and now I have just started solaris to replace IVIG! I feel lucky to have been diagnosed early and have been treated aggressively…minimizing adverse effects of MG.
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I got diagnosed at the onset. I saw my surgeon six weeks after spinal fusion surgery. At the visit, I experienced severe ptosis. He looked at me and told me to get my ass to an ER asap. At the ER, the physician on call punched my symptoms, including sudden swallowing difficulties and blurry vision, into his smartphone and diagnosed the MG. Spent 4 days in ICU, was given Mestinon, and was released when swallowing proved.
Four days later the swallowing problem reappeared. I went to the ER at UCSF Medical CTR in San Francisco. I was given 3 ivig infusions, and, after a couple of days, was preparing to leave. At night, my ability to breathe ceased. Pushed the emergency button and wrote on paper that I needed immediate intubation. Got Code Blue and rushed to ICU where I was placed on assisted breathing.
Spent 2 weeks in ICU and was released with an ng tube. Used that for 6 weeks and regained my ability to swallow.
I did a 4 week taper off Prednisone, received 3 infusions oh Rituximab at 6 month intervals, and currently am doing very well.
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This is a 2 stage question for me. It took a year because my doctor took blood for my double double vision and I am hard draw. The lab said they didn’t have enough blood to test. We didn’t resubmit at the time because my dr had doubts that is what the cause was. The double vision went away after a week. A year later it came back with a vengance and I tested positive for ACHR MODULATING and MYASTHENIA GRAVIS EVAL WITH MUSK REFLEX were both positive. Now I am under care of the neurologist and double vision is gone still some blurriness in vision. But it seems voice and leg strength is affected greatly. Stairs and getting up also numbness that does not go away. Does any one else have this with the legs?
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Yes, leg strength and especially stamina are affected. Arms, wrists and fingers also. Pyridostigmine 180mg time release 3x daily helps as does our single level home. Voice when I am fatigued, stressed or overheated.
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Thank you for the info. I still have a hard time accepting it as the symptoms are not cut and dried. I wonder if the prednisone sometimes is causing the leg issues. Arm strength is good but cramping in hands and legs is a daily occurence and that might be a side effect of the medicines.
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- Totally get what you’re saying. There is nothing cut and dried about what we go through. It truly is the snowflake disease. No two people react the same, treatments that work during one flare may not the next and no two days are the same.
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Yeah, strength of arms & legs was greatly affected. I was not a weakling and very active. The muscle weakness was originally blamed on my age, but I had my doubts. I walk with a cane only due to strength and balance issues. I had the whole suite of MG symptoms but most mild. However, Solaris seems to have improved my strength in arms and legs…but too early to tell.
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It took over 3 years for my diagnosis. My initial symptom was double vision but it would come and go for months at a time so by the time I got in to see the doctor the double vision was gone. I also had leg weakness but to complicate the issue I had hip replacements (the old method) and knee replacement so my weakness was blamed on muscle weakness due to surgery. I was scheduled for another knee replacement and I woke up the day before the surgery with double vision. My doctor cancelled my surgery and was able to call in a favor and I saw a neurologist the following day. So to make a long story short my diagnosis took approximately 3 years.
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I experienced trouble swallowing and keeping food down and was misdiagnosed as Acalasia after running some tests. I later started having trouble with my eyelids and seeing double. When I had some trouble with some of my facial muscles I saw my PCP who was the first to say Myasthenia Gravis to me. He referred me to a neurologist who ran blood test and told me I definitely had MG. She referred me to the area’s top specialist and I have had great treatment since then. It was at least 6 months from first symptoms to final MG diagnosis.
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I was 58 years old when I began 2 years of chasing seemingly unconnected symptoms (droopy right eye, doublevision, slurred speech, chewing issues); a coworker said I exhibited similar symptoms as his brother, who had MG. I sought dentists, opthalmalogists, and our company psychologist to no avail. I thought I’d go visit my uncle in Tulsa (he retired as Chief of Emer Med at Oral Robert’s UMC), but he told me to go the local ER. In denial, and frustrated with myself for not being able to even accurately describe what symptoms were compounding, I went to the ER claiming I was having the world’s longest stroke. A neurologist happened to be there to recognize these symptoms and take me on…
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I was 59 and woke up with a drooping right eyelid. When I went into work (Johns Hopkins School of Public Health) a colleague asked me about it and I said I wasn’t sure what it was, maybe conjunctivitis or a bug bite. Someone standing nearby overheard the conversation and put her hand on my shoulder and said, ” I don’t want to alarm you but you should go to the ER now and get that evaluated.” The worry (I found out later) was that it could be a sign of an impending stroke, aneurism, etc. After a rather stressful 12 hours or so in the ER, the preliminary diagnosis was MG, which was confirmed via testing within 24 hours. Less than two weeks after that, I had a thymectomy (successful) and put on a course of Mestinon. Seven years later, I am still only on Mestinon, but have scaled back my work and travel schedules (I work in International Health in disaster and refugee crises so there can be fairly high levels of stress) but I continue to work even while I manage continued issues with “mumble mouth”, muscle fatigue and some occasional difficulty with chewing and swallowing. It is a challenging disease but I am managing and continue to count my blessings — a loving wife and children, work that gives me great satisfaction, and a circle of close friends and relatives.
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