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How old were you when you were first diagnosed?
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I was diagnosed almost exactly 3 years ago when I was 70. I’d had double vision for a day and a half and went to the emergency room. first they did all the stroke protocols and determined I hadn’t had a stroke and then they did some M tests – – eyes on my eyes and an injection of pyridostigmine. When those had no results, they determined that I didn’t have MG but sent me to a stroke doctor. That doctor didn’t know why I’ve been sent there and sent me to my primary care physician. He ran a bunch of tests and determined. I had Anti-AChr MG and sent me to a fabulous neurologist.
So I was diagnosed within 30 days of my first visit to the emergency room.
My optical MG switch to general MG within a few months. I’ve not been hospitalized, though. I have had several flares.
The emergency room and the doctors I go to are all part of a wonderful teaching and research medical school and I have been very lucky to have them as my care providers.
I don’t think my age impacted the speed of my diagnosis. I think the nature and quality of my medical pro Were impacted the speed of my diagnosis. I wish everyone had a teaching and research hospital near them.
I wish all of us the best, stress-free, and fun holiday season. I love having you all in my life! Thank you.
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Thanks for your contribution Frank! I agree about having a teaching hospital and a care team that is open. I use the VA, but they get interns and work closely with the Mayo Clinic. It’s a wonderful combination and I am lucky to have one helluva care team.
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Seventeen. I had just had a hepatitis vaccine which was possibly the trigger. But I was in my first year at university and very stressed. I was diagnosed fairly quickly but it was a rollercoaster ride. Studied with one eye closed due to double vision, fell off my bike and couldn’t get up until the strength came back…a bus went around me and left me on the road. Often fell over on the campus and would be picked up by the gardener. People thought I was drunk. My speech was slurred. My friends in college would have to cut up my food, and when I got it up to my mouth I would choke. Liquid would come back through the nose because the palate was paralysed. Amanuensis for exams. I am now 80 and fairly well….due to thymectomy, homoeopathy, herbal medicine(I became a herbalist and massage therapist!) and careful marshalling of energy. Am so grateful, and so very sympathetic to those of you whose struggles I understand so well.
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So glad to read you are doing well, June!
Would you mind sharing what you herbs and other homeopathic options you have found to be helpful with your symptom management? I may start a new discussion so we can discuss just this!
Shawna
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Shawna, I have done a lot of “alternative” things which have helped….like a chiropractic adjustment once a month. I watch my diet a bit…..I personally react badly to wheat(I am not coeliac) and prefer to eat lots of fruit and vegetables, fish and chicken, and not much red meat. I watch sugar intake, drink a little white wine, plenty of water, take some yoghurt, especially to “cushion” the intake of Mestinon( which causes cramps as we all know). Thirty years ago(post thymectomy) I saw a classical homoeopath and after two years of treatment I was down from say. 6 x 60mg Mestinon daily to none! It was a gradual process and I trusted his knowledge (it was like peeling back layers of an onion!) and was quite fastidious in following his advice. I take Astragalus (5g) daily if I feel a bit “droopy” for a few days and although some say it is not recommended for MG, it is an adaptogen herb and has helped me (unlike some other herbs like Echinacea which stimulate the immune system in an unhelpful way for a myasthenic). Post Covid I take a little Mestinon, say 20 mgs in the morning and maybe 10 to 20 mgs later in the day if active. I don’t have a car and have never driven as I felt I might not always see clearly, and I don’t much like stairs or hills and the repetitive moves of dancing , sadly, weren’t for me. I would use dandelion as a liver herb, if a bit flat, and maybe vitamins such as B, or particularly B12. I find a little magnesium (usually not suggested in MG) a help if crampy. My GP suggested I take Ubiquinol, a version of Co Q 10 but this is largely for heart and circulatory help.
As you see, it has been a journey of discovery, and some frustration, but from being so weak I needed an amanuensis to help do University exams(psychology) in 1965,and could only study with one eye covered, I now lead a really great life, as long as I keep taking care. I always avoid smoke and agricultural chemicals which might contain nerve toxins. It’s an individual thing and it may be that what suits me doesn’t help for others. But I hope this answers some of your questions. There is no magic bullet. I absolutely had to help myself. Good luck.
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Thanks June! This is all very interesting.
My body doesn’t react well to wheat either and I avoid it if I can. My son has started baking bread and I splurge and eat more than I probably should when he pulls a loaf out of the oven. Homemade doesn’t bother me nearly as much as store bought.
It is definitely a journey of self-discovery. Just like the disease, no treatment – pharmacological or homeopathic – will affect each person the same way.
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It is SO GOOD that this forum is available. It would have been such a comfort when I was seventeen in 1962 and struggling alone. I was the sixth thymectomy for MG in Australia, so there wasn’t a lot of information available despite finding a good neurologist and having a “recovered myasthenic” nurse me in hospital.
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My first symptoms were in February 2022. Three optometrists and 1 ophthalmologist later I finally got fed up and called another ophthalmologist and was diagnosed in early September of this year. My body didn’t get the memo either about the norms for this. I’m a 75-year-old woman.
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I was 12 back in 1972. Clinical diagnosis. They didn’t test for antibioties then.
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Twelve years old! I can’t imagine how hard that was! For right now, my only problem is my eyes. I do get tired, but not really that bad. I’m still able to get up in the morning and go to my local YMCA and walk. I’m on Mestinon for my double vision and that helps. I can drive. Since I had progressive lenses before this happened, I do have a lot of problems reading. Prism lens doesn’t work that well for me so I usually have one eye opened (left) if I need to read.
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The same here! How much Mestinon do you take? I take 60mg of Pyridostigmine 3xs a day and have Prism glasses done at the VA. I had prism glasses made by 2 different eye Doctors (Companies) and neither did a discent job. I’m a Vietnam Vet and the VA prisms work but not good for reading small print. Pyridostigmine HELPS especially the ones made by “Major Pharmacuticals co.”but I can’t find where to get them. The VA gives you whatever they Get, some good some not so good. Merry Christmas. Good luck.
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I was 78 yrs old when MG was diagnosed two months ago (10/24). Up until that time, I was in (apparently) great shape and physically quite active. Initial symptom was difficulties with swallowing. A young endocrinologist intern immediately suspected a neuro muscular issue and ordered an MG panel which came back positive for irregular cells a week later. In the meantime, while attending my grandson’s HS football game, my speech suddenly became garbled making oral communication interesting (to say the least). After a CT Scan and MRI ruled out a stroke or any blockages or tumors in my throat and neck, I was informed of the results of the MG Panel. I have been prescribed Pyridostigmine and Prednisone which have been working fairly well, but a little inconsistently. These are the only symptoms to date, and the “good” News is that I’ve lost 15 lbs due to issues with swallowing food. I’ve been telling folks that I always wanted an MG, but I was talking about the car.
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Like you wanting the four-wheel MG, I read that MG is a rare disease. While I am a middle child, I always wanted to be “special” growing up. However, this is not what I had in mind. 🤭
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Vietnam Vets got it because we were sprayed by “Agent Orange”, a so called defoliant. A lot of soldiers suffered and died from AO. Maybe see a Neurologist that deals in Immune dissorders. Pyridostigmine helps. Merry Christmas and good luck
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I was diagnosed when I was 73 ( 2020). I had experienced symptoms over a three month period eg, slurred speech, unable to swallow, weight loss owing to being unable to eat. Everyone though I had had a stroke but every test they did came up negative. Couldn’t find anything wrong with me. Eventually I was sent to Walton Neurological Hospital in Liverpool. Where they admitted me immediately ( with no clothes) and after extensive tests they diagnosed Myasthenia Gravis. I spent two weeks there and slowly began to eat pureed foods. This was during Covid year so I had no visitors. I was sent home after a fortnight with a list of medication, and feeling a lot better. However 6 weeks later I suffered a crisis and was in a coma for several days and wasn’t expected to survive. Thanks to the skills of the staff at Whiston I survived and went home four days after coming round, and have been quite good ever since. Again this was slap bang in the middle of Covid so I had no visitors, and of course, the staff were under immense pressure with all the Covid patients. I will forever be grateful to the dedicated team at Whiston for pulling me through .
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I was 65 when I was diagnosed. It took 6 months and a 3 week stay in the hospital until they figured out what I had. Since then, I have been on IGIV, Vyvgart and now Ultomiris. I take Mestinon (240 mg daily) and Imuran (200 mg daily).
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I was diagnosed immediately after I received a J & J covid vaccination in March of 2020. Coincidence?
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There have been a couple of incidental findings that folks developed MG after receiving vaccinations. You can read more on the findings at the links here if you’re interested.
https://myastheniagravisnews.com/news/onset-of-mg-following-sinopharms-covid-19-vaccine-reported/
https://myastheniagravisnews.com/news/report-3-cases-myasthenia-gravis-linked-covid-19-vaccine/
myastheniagravisnews.com
Onset of MG Following Sinopharm’s COVID-19 Vaccine Reported |...
Researchers in Iran reported a first case of myasthenia gravis in a man after he received Sinopharm’s inactivated vaccine against SARS-CoV-2.
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I was 12 yrs old in 1972 when I was diagnosed, and it has been a journey.
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My ptosis began at age 37. Many doctors told me they couldn’t see it. I was lucky to have a neurologist who easily noticed the ptosis, and followed the diagnostic protocol for MG. I had to wait a long time for the SFEMG, and my symptoms generalized a month before my test. I received my official diagnosis at age 38.
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I was 80 and started with droopy eye and significant incontinence exactly 1 month after having COVID-19 in July 2022. Fortunately my eye doc and pcp referred me to a great neurologist who put me through all the not so nice tests and by September I was on mestonin which I only need one 60mg in the morning to keep me droop free. Incontinence hasn’t been solved though. Pretty lucky I think.
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I was 79.
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I was 68 yrs old but I’m sure looking back at my symptoms I’ve had MG at least 10 yrs and 5 doctors ago….not sure if my age had anything to do with it…..
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72, hadn’t sought any medical help, only symptom, droopy eyelid. Diagnosed in the ICU, turned out l was in the middle of a Myasthenia crisis.
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I was 31 when I was diagnosed. I’m 45 now and it’s been a struggle. My children suffered the most. They lost out on an active mom sho now depends on them.
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I get this. My son got bullied because I would go to his football games in my wheelchair. He’s turned into quite a young man that I couldn’t be more proud of. You may be surprised at what your kiddos take away from the experience.
He is 22, almost 23 now. He wrote about living with a mom with MG a few years ago for my column, The Whispered Roar. Give it at a gander. It might help settle some angst or guilt.
https://myastheniagravisnews.com/columns/my-son-speaks-out-living-with-his-moms-myasthenia-gravis/
myastheniagravisnews.com
My son speaks out on living with his mom’s myasthenia gravis –...
Columnist Shawna Barnes interviews her 21-year-old son, Caden, about growing up while living with her myasthenia gravis.
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I was 15 yrs when diagnosed after 2 years of my gp treating me for what he wrongly thought was anorexia and depression – because I couldn’t smile or eat and had terrible weakness and exhaustion.After I had endured 6 weeks of E.C.T. treatment and insulin coma treatment which made me much worse , I went into a crisis and was taken to ED where a young doctor fresh from university diagnosed me after questioning my mother – so treatment started, which led to a thymectomy after another crisis and the slow journey to remission. I am now 79 and recently back on prostigmine aftercsymptoms returned over the past 2 years.
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How wonderful that your remission last as long as it did! I hope the recurrence of your symptoms has been manageable.
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I had it for 15 to 20 years befoe a Neurologist diagnosed it. Others said I had Virtigo, Ataxia or just didn’t know. I was finally diagnosed1 year ago at 77.
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I was 69 when I was diagnosed. The previous year I had a serious infection and was on 2000 units of vancomycin a day thru intravenous (to fight the infection) for six weeks. Six months later, my right eye became heavy and wouldn’t stay open. Was thought to be allergy problem until I was seen by my eye doctor who diagnosed the problem.
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