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How old were you when you were first diagnosed?
Do you think your age had anything to do with how quickly you were or were not diagnosed?
Do you believe that you were taken seriously on your journey to diagnosis?
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54 Replies
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For me, my symptoms began in 2011 when I was 27. I didn’t get a working diagnosis until I was 33, and an official/confirmed diagnosis at 34. I am now 40.
I think my age definitely played a role in my diagnostic journey because I was one of the younger veterans being seen at the VA where I was being treated. I had a lot of old information and mindsets that I had to change in general, let alone when it came to having a rare disease that presented atypically.
Now, I have an amazing care team that takes me seriously and I am working towards living my best life.
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I was 66, and am 70 now. I feel like my age has made my MG worse. I have a moderate case, but as I get over 70, I find a marked decline in energy.
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I was 76. I certainly don’t fit the mold of young women and old men that are the most common people to get MG
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Do you think that you were taken more seriously or were you dismissed because you didn’t fit the mold?
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58
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Thanks Tom! How long have you been navigating MG?
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I was 67 when diagnosed. Fortunately I was seen in the hospital by a Neurologist who made an immediate diagnosis.
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My ophthalmologist noticed possible ocular mg at age 63 and referred me to a neurologist. It took almost 2 years to get a final diagnosis.
I am now 68. I do plasma exchange and it works great for me.
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Why do you think it took so long?? My started about 15yrs ago and all I got( from the VA ) was Prism glasses.
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Hey Paul. I was also given a “proposed” diagnosis by my VA ophthalmologist. I didn’t get prism glasses though. He just helped me get the meds and referrals to a community care neurologist that knew about MG. I think it’s hit or miss with the VA. Especially with MG. Some docs are up to date on current diagnostic criteria and treatments and others are not. I think that is a big part in the delay in treatment and confirmed diagnosis. Especially if you’re seronegative, like I am.
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I went and saw an American Leigon VSO and they did all the paperwork but you have got to show “evidence” supporting your claim of MG. Go to a Neurologist outside the VA that deals with immune diseases. good luck.
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75
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I was 60 when I was diagnosed. An eye doctor I was sent to, by my PCP, due to my left eye not tracking with my right eye. When he walked into the room, he looked at me and said he knew what I had and told me to close my eyes, and he would be back in few minutes. What I did not notice was one of my eye lids was drooping a bit. He walked back in and said, “open your eyes”. He then said I had MG but he would send me to a neurologist to be tested. Unfortunately, he was right.
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I got my working diagnosis from my eye doc as well thanks to good ole eye droop/ptosis.
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I was 23 when I was diagnosed I’m now 24
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I was 58, for me the onset was ferocious. My vision suddenly doubled, then within an hour the side of face began to drop, my speech started slurring a short time later. Finally my whole left side went weak. Ack! A stroke I thought. At the ER a short time later stroke was ruled out and the Doctor in the ER called in an opthalmologist who quickly diagnosed MG. So, a blood sample was drawn and within a week I found out I was ACHR positive. Despite initial high dose steroids, I had my first big crash. That was 2014, the battle continues.
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Hi folks, my first name is Gordon, I’m from Angus, in Scotland, and I’m 68.
Early in 2024 my left eye was a bit twitchy and I had periods of extreme tiredness, and just put it down to my age.
In April I had an eye test and the optician noticed the drooping, took a couple of pictures and sent them to Ophthalmology for their opinion.
A couple of weeks later they got in touch with the bad news, it was OMG. They took blood and did some tests to confirm.
I have inflammation in my shoulders, arms and wrists, fatigue, sleepiness, slurring and droopy eyelids.
No doubt more symptoms will present themselves as it progresses.
My hobbies are canoeing and fishing, paddling and casting makes the shoulder and wrist pain more bearable.
So glad we have Universal Health Care here because I would be in a state of penury by now.
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Welcome to the forums, Gordon. So glad you’re here!
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23yo (final year of college); diagnosed with Hashimoto’s during same neuro-ophthalmologist appt. Thankfully my symptoms were taken seriously and dx came quickly due to Achr + abx. It was all the other conditions at the same time of onset that were more difficult to get a dx and treatment. </div>
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I was diagnosed at age 63 in 2019 but an abnormally low exercise tolerance for my age and fitness level was noted in 2001 during a stress test.
I don’t think age affected my diagnosis but trauma and stress due to a severe ankle fracture in late 2018 was a big factor. In early 2019, I saw My optometrist for a drooping eyelid/double vision & was told to see my primary care physician for possible MG. My primary care physician did some preliminary tests and referred me to the rapid diagnostic neuromuscular clinic at my local university’s medical school. I was diagnosed with gMG 3 weeks later.
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I had just turned 70 a few weeks before my symptoms appeared. I spent three months with a primary care doctor who misdiagnosed me a couple times, but he had the wisdom to refer me to a neurologist; I just had to wait almost three months for my appointment. The neurologist diagnosed me in about 10 minutes , but did the confirmatory bloodwork. I don’t think my age had any negative effects on the speed of my diagnosis. Instead a lack of neurologists in my area contributed to a long wait for an appointment.
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Thanks, Jay. I’m glad to see that you don’t feel age was a related factor. I think misdiagnosis happens frequently with MG since it often mimics so other more common diseases. I know i had several “working diagnosis'” before it was confirmed to be MG.
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I was 64 when I was diagnosed. It was actually my eye doctor who diagnosed it. At first my primary was concerned about a stroke because of my eye closure. My eye doctor recommended a blood test to my primary and ultimately, I was positively diagnosed with GMG. It took quite a while for me to get to a Neurologist but once I did, I have been treated wonderfully. I wish you luck through your journey.
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Hey there Sam! Being diagnosed by one’s eye doctor seems to be a common thread here!
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Hi my name is Monica I was diagnosed when I was 58 it took awhile as I did not get bad at first I say it took longer then 2 years and I think I might have had it when I was a teenager Have been on Soliris for 5 years and doing fairly well I have been on Cellcept Imuran IVIG plasma exchange Mestinon Predisone ultirmiris
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Welcome, Monica! I hope as you are navigating the forums you are finding the help you’re looking for. <3
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Sorry Monica again I also have been in a study called descart-08
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I was 69 last year. Had a hip revision in August last year and at the end of September was in the er with a myasthenia crisis. Had never heard of MG. Took them 4 days to diagnose. Couldn’t walk talk swallow or breathe. Coma for a week an intubated 3 month hospital stay. What a journey it has been. Probably 90% recovered. On cellcept and prednisone mestinon occasionally. Turned 70 three days after getting released.
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I was 33 when 1st diagnosed and am 81 now. Most of the years after diagnosis were mild to moderate symptoms. Now I have weakness in my legs that causes me to use a walker or wheel chair. Have been treated thru out the years with mestinon, prednisone, cell cept and Rituxan and IVIG. I also have lupus, pulmonary hypertension, AFIB, breast cancer, waldenstrom’s macroglobulimia, have had a heart attack but am still fairly active and still here. Back in 1976 they said myasthenia was a disease of young women and older men. Never met another person with myasthenia until I was in my mid 70’s even though I worked in a hospital for 30 years. Sally
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Glad to have your experience here Sally!
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I think the MG started even in high school but definitely in my early 20s. I was officially diagnosed at 28 in 1975. It took about a year and a half and 3 doctors to get answers. There wasn’t much info on MG back then and the only treatments were mestinon, prednisone, and neostigmine. Thymectomy was available and I had that done. Plasmapheresis was brand new and experimental. I was the first one to receive it in my area and it was done manually at our local Red Cross. I was taken from the hospital to the Red Cross every day for I think 5 days. It’s been so long I don’t remember how many. I did go into a long term no med remission a few years after my thymectomy. It returned the fall of 2018. I think I was in the peak age for women to have MG did help with my diagnosis. I was so rare back then and my family doctor, who knew me, was the one who said it was MG. All the specialists kept coming up with other things. And when he sent me back to the neurologist who then did a repetitive nerve test said the my family doctor pulled off the diagnosis of the century. So having difficulty getting diagnosed isn’t new.
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I was 65 when I was diagnosed with gMG in 2022 after experiencing double vision, slurred speech, difficulty holding my head up, and fatigue. I was referred to a neurologist who had an MRI and CT done to rule out thymoma and any brain issues, and blood tests done that confirmed AChr positive. I am on pyridostigmine and IVIg infusions monthly. I’m managing the MG pretty well. Make adjustments in my schedule as needed.
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I had just turned 68 in June 2019 at age 68. My first symptoms … hand weakness and eye issues appeared on JULY 25, 2019. I would not be finally diagnosed till 8 months later, on MARCH 24, 2020 … by a third floor nurse at the second of five 2020 hospitals. She believed me … as she had encountered MG patients in the past, transferred from BARROWS NEURO next door in Phoenix. Eight months of clueless doctors, and two hospitals, could not diagnose their way out of a paper bag, including an eye doctor, and three hospital “neurologists” that I can name. Newly recovered hospital papers from PICNIC HEALTH RARE DISEASE FOUNDATION showed someone ordered AChR antibodies tests, that were released at 3am on 2-10-2020, that were very SERO-POSITIVE, but no one could understand them ??? So, the nurse at the second hospital talked them into doing a NEURO-CONSULT, and 6 AChR tests (3 binding, 2 blocking, and 1 modulating) … that were very SERO-POSITIVE too, so she was proved correct in recognizing my ACUTE MG. So I was then started on 5 days of IVIG.
The five 2020 hospitals did a lot of damage to me … a CODE STROKE (died of acute hypercapnic respiratory failure … overdose of sedatives for MRI), three hospital ICU contracted pneumonias, a TRACH, a PEG TUBE, IRRIGATION/DEBRIDEMENT SURGERY, 4 months of 100% HEARING LOSS (due to TOBRAMYCIN), and medically induced DIABETES II, due to large doses of PREDNISONE. But I am still in MG REMISSION, and taking over 5500 MGs of MEDS daily, including CELLCEPT and MESTINON. But my Diabetes II is in remission … no more LANTUS shooting up.
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I was 71 when I was diagnosed.
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Male, 83, diagnosed in 2018 by the Mayo Clinic. I’m bedridden now and after 5 different drug regimens including plasmapherisis and IV/IG. I’m now on Firdapse which is used to treat LEMS and IV/IG. My neurologist is busy with over 35 patients and said to me that he will try everything until something works. I’m glad to be a Guinea pig when I read about young women who have MG and still have a family to care for.
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I too have volunteered to be a guinea pig for treatments and treatment cocktails with my neurologist at the VA. I’m lucky in that he wants to see me live my best possible life and is willing to do what he can to help me get there. <3 I am 40, married, run two small businesses and have an adult child (he’s 22).
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I was 68. I initially experienced slurred speech and chewing fatigue. I was diagnosed within a month but lived through 2 crisis before things stabilized with low dose Prednisone and weekly IVIG that I do myself (Cuvitru). Since i went on that regime I have been stable for 6 years. I have been able to play tennis and golf with a few hours of rest in between.
MG has its ups and downs. There are times i have to back out of activities or social engagements for a few days but i seem to rebound. symptoms are controlled most of the time. thank goodness. Crisis have to be avoided at all costs.
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