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How easy it is for doctors to miss myasthenia Gravis
I have read of so many cases where patients suffer with myasthenia Gravis for years before the diagnosis is made. I would like to share my life experiences on how easy it is to miss this diagnosis.
In January 2018, I was in India on an extended pilgrimage when I had a problem with my eye. I woke up as normal, but by mid morning, my one eye began to droop. I figured that maybe I hadn’t slept properly, and I was probably tired. So I took a nap. After that it was okay but gradually began drooping again. After a few days I went to an Eye Speciality hospital to have it seen to. The doctor asked me if I had any other symptoms. Obviously being an eye doctor I did not expect to be telling him about other health issues. It was then diagnosed as ptosis due to weakened muscles because of my age. The operation was performed successfully, and I was back to normal. However a month later, It drooped again. A second operation was also successful, but I noticed that in the mornings after a good nights sleep, I would be fine, but as the day progressed it would be a problem, though not total droop. I then researched on the internet, and realized that I had other symptoms which I had not linked to my eyes. Weakness in my legs when climbing steps, swallowing difficulties and breathing problems, had also started around the same time. I then spoke to the doctor and told her that I suspected Myasthenia Gravis. Her answer was that they had considered it in the beginning, but I had not mentioned these symptoms. Had the doctor explained that they wanted to know if I had any other symptoms anywhere else in the body, I would have told them. Anyhow, she did an ice test on the eyelid, and there was no change. I left it as it was and then returned to my home country , Zimbabwe.
For about three months, my eye was okay and I was used to it getting ‘tired’ as the day went. But suddenly, my other eye drooped totally, and would not open sufficiently for me to see. I then went to see a general practitioner doctor and explained my suspicions. He immediately discounted it and started doing tests for other conditions. I knew that no one would help me to confirm I had MG. I then discovered a blood test for Acetylcholine Receptor anti bodies. I read that absence of anti bodies did not rule out MG, but a positive result would confirm it. I arranged for a laboratory to have the test done in South Africa, and then gave the result to my GP. He then referred me to a neurologist who did a nerve conduction study which confirmed the diagnosis as Ocular Myasthenia. I was then prescribed pyridostigmine. I have not been back to the neurologist, and now try to judge my dosage according to how I feel. I have kept my medication to a minimum, and when I feel that it’s getting worse, increase the dosage. It is my belief that only the person suffering can judge how much medication will suffice. This might not work for others. But so far, I have had 2 crises in these last 2 years. One was from too much pyridostigmine. I had called my neurologist and from my symptoms, he judged that it was a cholinergic crisis and advised me to stop taking my medication for a day or two. At this point I should mention that I live about 80 kilometers away from the nearest specialist.
My second crisis was from too little medication, which I did not realize. When I got worse, I quickly took a tablet, and I was okay. This might seem dangerous, but in my case, I think that if I had stuck to a fixed dosage, I might have ended up being hospitalized. I believe that we should also do our own research because doctors can easily be directed to what’s most common in their experiences. -
18 Replies
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By the way, just to clarify my use of different genders. The first doctor was male and the surgeon who operated was female.
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In January 2020 I developed diplopia. The ER ruled out everything they could think of. They referred me to a Neurologist. The Neurologist had me try every test she could think of that might prove MG, but everything was negative. The diplopia disappeared after 2 months and the MD decided to r/o MG. This summer I developed diplopia (again), slurred speech, difficulty swallowing, drooping eyelid, and weak facial muscles. This time the (same) Neurologist confirmed MG (yay?). I’m 68, so it’s late-onset. So, yeah, apparently even good MDs find it sometimes difficult to diagnose.
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Doctors don’t ask Questions about your symptoms. They want $$$. tell them his hurts, send to another Doctor for tests, this other thing bothers me, send them for tests to another Doctor, and so on-and so on.
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I have a similar story, but the inept neurologist was in the US, Dallas area (I guess they can be incompetent anywhere). In 2016, my left eye started to droop. No other symptoms, just a droopy eyelid. I went to an eye surgeon and she discussed a procedure to pull the lid up. Day of surgery, prepped and laying on the operating table. She said “Wait, your eye looks different – it’s drooping more. I can’t do the surgery. I want you to go to a neurologist. I think it may be myasthenia gravis.” After a couple of visits, a CT Scan and bloodwork for acetylcholine receptor binding and other MG indicators, he pronounced me clear to have the eye surgery. The eyelid was tucked up. On my 1 week f/u visit, the eye was drooping again and she performed a tuck in office. No luck as drooping continued.
Back to the neurologist who reviewed my bloodwork again. “Well, I guess you do have MG!”. My acetylcholine receptor binding number was more than 3 times the limit for MG. Talked to an attorney, he felt there was no case to pursue. Doctors get away with being sloppy and we patients (and Medicare) suffer and pay the price.
I do 300 mg of Mestinon and 5 Cellcept a day with 5 mg prednisone. Under control, only feel it when I’m out in the heat being active.
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AGREEEEeeeee!
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Yes, even good MD’s can miss it, but it’s so much easier to misdiagnose if you’re a lazy doctor. We had both gp’s and consultants unable to diagnose until after about 9 month of trying to find an answer, hours of research each day, I finally diagnosed it myself and taking my diagnosis to both a gp and a neurologist, they then both say similar things “yes I was going to say that”. So why not 9 month earlier. When the neurologist finally accepted my diagnosis he then disagreed with me on the best course of treatment and put my partner, unmonitored, on too high an initial dose of prednisolone and she ended up being rushed to hospital and put on a drip and fed through a tube. The new neurologist then reduced pred and added pyridostigmine, both of which I’d said originally and things very quickly improved. So, is this ‘difficult to diagnose’ or laziness and lack of care? Considering I diagnosed it and i said what treatment was required, I’d say professionals should have got both diagnosis and treatment correct months earlier. I’m not trained in any way except common sense and caring, both sadly lacking in the NHS.
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I find the vast majority of doctors to be bad in my immediate area. (Mid- New Jersey) After a few years of frustration I now travel to a top hospital in New York City. An hour and a half is not much trouble for having piece of mind that they are competent.
My relative took fistfuls of medicines for 8 years for MG. (Without any relief.) She finally traveled to a top MG doctor who after 30 minutes and a single-fiber test said she didn’t have MG and never had it. The medications ruined her health and she has never recovered from the damaging side effects. Supposedly sero-negative but she didn’t even have it. Doctors just took advantage of her .
I am seropositive. So I’m sure I have it. -
I am a lucky one. After a year of symptoms and finally being on a full liquid diet for 2 months I finally went to the doctor. My eye lid was drooping badly, my swallowing & speech were impaired. It took me 2 doctors and a year of being miss diagnosed to finally be properly diagnosed with MG. My first diagnosis was Herpes Simplex of the eye. Then my doctor swallowed his pride and asked me to see a specialist. Interesting thing is while waiting to see a neurologist, I went on WEBMD, typed in my symptoms and in 3 minutes I was 95% sure I had MG. I wish the Doctors would utilize All the tools available and maybe even confer with each other to better their knowledge of our disease. Yes, doctors do prescribe what has worked for them in the past and seem real reluctant to try anything different. Mainly because the disease is so unknown, they just do what had kept others alive. I have heard that on average it takes an MG patient 3 doctors and 5 years to be diagnosed. I was lucky and my neurologist specializes in MG and new what he was looking for. Their aren’t many out there that do, mainly because it is rare. Good luck folks, Be Safe & Stay Healthy
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Thank you for commenting about MG and your own situations that you had to go through. WE LEARN FROM EACH OTHER……. It took me 8 months to get a diagnosis. No doctor was ever able to diagnose my ACUTE OCULAR MG or my ACUTE GENERALIZED MG symptoms. Finally, an intelligent floor nurse at the second hospital saved me and diagnosed me, and got me tested, treated, and IVIG treatment. She said “I know exactly what you have. We have patients right here at St. Joseph’s hospital … who have all the symptoms that you are exhibiting. You have MG!”
I have been in remission since late November of 2020 … and am doing okay with large doses of CELLCEPT and MESTINON, after having very bad reactions to the steroid PREDNISONE … that they finally tapered me off of.
I was finally thrilled to have a name for my disease … so that I could also google and research websites such as John Hopkins, Mayo Clinic, and a British one with great links on http://www.myaware.org. I have also googled EBAY and bought 4 excellent books that tell the stories of 56 MG patients. The key to a diagnosis … is having a trained eye doctor … who notices your MG symptoms … and refers you to a NEURO EYE DOCTOR … who then suspects MG and refers you to a NEUROLOGIST for proper tests and an MG diagnosis. But my eye doctor did not recognize my eye problems and sent me on my way with a prescription for 20/30 reading glasses. So I was very unlucky and lucky too. My eye doctor failed me as a doctor … but at least he did not try to talk me into an eyebrow lift … that other MG patients were told to submit to.
So if no doctor believes you, do your research, google questions/symptoms, and find a knowledgeable, trusted NEUROLOGIST. Mine is worth his weight in gold … and did not look at me as if I had three heads … when I tried to explain my 8 or 9 symptoms … that got worse in afternoon hours. There are support groups and ZOOM meetings out there … both locally in the US … as well as in Britain, that I recently was in on (7 hours earlier in Phoenix from London ZOOM start time.) BE EDUCATED AND YOUR OWN MEDICAL QUARTERBACK.
Both my “golden” new NEUROLOGIST and the MG websites … have printable handouts … that you can give to your other doctors and the arriving ambulance 911 team … about drugs that can be dangerous to MG patients … such as STATINS, STEROIDS, BETA BLOCKERS, ANTIBIOTICS, and ANESTHESIAS …. as well as our MG breathing/choking/need to stay sitting (NEVER LYING ON OUR BACK issues).
I had total hearing loss for 4 months, due to an ill-chosen ANTIBIOTIC …. and had a collapsed right lung and acute respiratory failure … when they gave me too large a dose of anesthesia …. when my breathing was already badly suppressed due to undiagnosed MYASTHENIA GRAVIS … and my compromised DIAPHRAGM muscle breathing. SO BE EDUCATED AND BE SAFE !!!!!
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It took 3 years, I saw numerous specialists, and I ended up figuring it out myself, called an NM specialist and tested positive for Achr antibodies, then he didnt want to treat menwith anything but mestinon. Found a new doctor who is including me in my Healthcare decisions
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Back in the 1960’s I think I saw an episode of Ben Casey and a patient was diagnosed with MG and part of the discovery was acute pain? When I experienced symptoms I saw a ophthalmologist who wanted to correct my drooping eyelid. A nurse at the mfg. plant where I worked told me about MG and my PC sent me to the university where a Syrian Doctor was well versed re MG. I later learned MG was very often missed and treatment schemas was not well known. I did not experience pain to the degree Ben Casey saw for his diagnosis and I feel theatrics was at play for a not so well known disease. After my Thymo job I have been symptom free for over twenty years. I am always looking over my shoulder for return of symptoms. I am 78 now and several docs have discussed symptoms with me. Strange illusive disease.
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Slightly confused by your post. Diagnosis of Ocular MG means it is just in the eyes. Are you mis diagnosed still?
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Ocular myasthenia was the diagnosis, but I had continued trying to manage with other symptoms of generalised MG. Last year, 8 months after that post of mine, I crashed. My eyes shut, I had bulbar weakness, and choked every time I tried to eat. I couldn’t swallow. I would then go to the bathroom and try to wash out my mouth. I couldn’t gargle. The muscles were not working. The neurologist who confirmed the diagnosis would only see me if I paid an extra amount on top of my insurance. I hadn’t seen him since the diagnosis. I then saw another neurologist who immediately said that it was a misdiagnosis and incorrect treatment. He then put me an immunosuppressant azathioprine, and prednisone. That saved me. Unfortunately, the day after I began the new treatment, I went deaf in one ear, and had an effect on the other. I saw an ENT specialist who did a thorough exam with MRI etc . He said it was caused by my MG and the azathioprine. That’s my story. I’m tired. Every moment, every day is different.
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FROM 2002-2006 I SAW OVER TWO DOZEN NEUROLOGISTS/NEUROSURGEONS AT THE BEST NYC HOSPITALS (BETH ISRAEL, HOSP. FOR JOINT DISEASES, HOSP. FOR SPECIAL SURGERY, MOUNT SINAI). EVERY DOCTOR MISSED THAT I HAD MYASTHENIA GRAVIS!!! I TOLD THEM ALL I HAD; TERRIBLE WEAKNESS/FATIGUE, BLURRY VISION THAT READING GLASSES WON’T HELP W/20/10- VISION, TROUBLE SWALLOWING, JAW PAIN & CLICKING, ETC.
IT TOOK ONE OF THE LAST ADENOLOGISTS (GLAND DOCTOR, NOW LUMPED IN W/NEUROLOGY) IN EXISTENCE TO DIAGNOSE MY CONGENITAL GENERAL MG IN A BROOKLYN HOSP. TO GET IT RIGHT. BUT HE ONLY WORKED IN ANY HOSPITAL FOR 2-HOURS A WEEK AND I NEVER SAW HIM AGAIN. THIS IS HOW BROKEN THE MEDICAL FIELD HAS BECOME. SO I RESEARCHED MG MYSELF ONLINE FOR YEARS (NOT AN EASY TASK) AND KNOW MORE THAN ANY NEUROLOGIST I’VE EVER SEEN.
I EVEN WENT TO A MG FOUNDATION MEETING IN MANHATTAN IN 2007. ONLY ONE PATIENT SHOWED UP BESIDES MYSELF. THE DOCTOR WHO WAS SUPPOSED TO BE THERE DIDN’T COME??? A WASTE OF TIME…
ON TOP OF MG (WITH AN XL HYPERACTIVE THYMUS GLAND THAT NO DOCTOR UNDERSTANDS YET! IT BLOCKS ALL NEW MEDS SINCE 2009), I HAVE BAD DEGENERATIVE DISC DISEASE AND FIBROMYALGIA/BILATERAL SCIATICA. I’VE BEEN HOMEBOUND/MOSTLY BEDRIDDEN AND TOTALLY ALONE SINCE 2014.
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I had a good optometrist and family doctor who both suspected my drooping eyelid might be MG and after the ice and blood tests, referred me to a local university’s neuromuscular clinic where I had further tests and was diagnosed. After aggressive treatment (low dose prednisone and pyridostigmine) for the first year, I was switched to mycophenylate for maintenance. Pyridostigmine is a short acting medication so my neurologist said dosage can be self-managed if a specialist allows it but other medications may not be (again, speak to your doctor). I had a negative experience reducing the dosage of mycophenylate resulting in a return of symptoms which I struggle to stabilize. My neurologist had agreed to allow the trial reduction of mycophenylate dosage but cautioned me to immediately return to the previous dose if symptoms returned. He also cautioned that it’s not always easy to return to stability on the previous dose. He was right. We started the trial and a month later, some symptoms started again so I went back to the previous dose. After a year trying to stabilize on the previous dose of mycophenylate, he prescribed pyridostigmine as an additional medication for me to take when I notice symptoms since I’m stable most of the time now on mycophenylate alone.
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Thank you for making the point about self controlling pyridostigmine because it is a short acting drug. I recently stopped taking it because the side effects were too much. But I’m still taking azathioprine. When I started taking it, my neurologist told me that it can take months for it to become effective. He also warned me not to stop on my own. I now understand from your post that I could take a chance to stop pyridostigmine because if I felt symptoms returning, I can start again. But stopping another drug would be dangerous without supervision of my neurologist.
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Apparently medical schools aren’t doing a good job of training doctors.Despite attending 8 plus years of learning practically every one of them misses not only MG but in my experience many other conditions. I have been in the medical field for going on 50 years and have never seen it so bad.
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I am 80 years old and agree totally. Initially, I had severe widespread burning neuropathy and Lupus maintained on daily steroids for 30 years. My first MG symptom was a drooping right eyelid. Now I have upper body weakness and some weakness in my arms and legs. The neurologist at the (Dallas) medical school here still prescribes Mestinon, but says he only sees Fibromyalgia, which is ridiculous, since I have widespread weakness and my head falls over . I had 2 positive LRP4 tests come back, one from the Mayo Clinic. He insists I need the EMG/Nerve Conduction studies, but with all of the burning, I don’t know how I could stand it… I am on 11 mg of Prednisone daily and sometimes I take an additional mg in the middle of the day along with Mestinon. I am getting zero instruction and have seen 4 neurologists. This is so upsetting, but I don’t know what else to do. Patients should not have to self medicate and I need overall help. I think I may have some related GI issues, but where do I start? I am in the Dallas area and have been to the ER 7 times fruitlessly. They say they do not see the weakness, although my neighbor sure does.. There is other stuff going on, too many confusing things. I am having trouble posting here, it only lets me “reply.” Would someone please tell me how to initiate a post? Thank you.
Cathie
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