Myasthenia Gravis News Forums Forums Healthcare and Treatments Describe the Moment You Were Undiagnosed With MG, but Realized Something Was Seriously Wrong

  • Describe the Moment You Were Undiagnosed With MG, but Realized Something Was Seriously Wrong

    Posted by jodi-enders on March 8, 2023 at 12:57 pm

    Some of us notice unusual symptoms and end up in the hospital and receive a diagnosis of MG, sometimes in a matter of hours. Many with MG endure years of symptoms. Sometimes tolerable symptoms that people learn to deal with, and sometimes people seek help from every corner, and it takes years to get an answer. 

     

    However long it took you to get an MG diagnosis, there was a moment that made you realize you needed to follow through with medical professionals to address what is causing the unusual symptoms you may have experienced. 

     

    Describe in as much detail as you remember when you knew something was acting up with your body, ultimately being MG.

    sharon-haw replied 11 months, 1 week ago 7 Members · 7 Replies
  • 7 Replies
  • kent-estes

    Member
    March 8, 2023 at 2:13 pm

    I was working in my yard one afternoon…. I experienced sudden onset of double vision.  I called my GP and was told it was likely I was having a stroke.  A trip to the ER followed.  An ophthalmologist noticed drooping eye lids and ordered blood tests which showed antiACH receptors antibodies.  Treatment followed…. and continues.

  • frank

    Member
    March 8, 2023 at 2:23 pm

    I was on my way to a wedding and noticed I suddenly had double vision. This had happened once before and went away quickly. But this continued for the rest of the day and I decided if it didn’t go away after a good night’s sleep I’d get it checked out. On Sunday morning I woke up with double vision and headed off to the emergency room.

    They wondered if I was having a stroke and did lots of tests and discovered I hadn’t had one. The did the ice test on my eyes and gave me an injection of Pyridostigmine and neither of those indicated I had MG. So after over 24 hours in ER they sent me home and told me to  see my PCP.

    He had blood tests done and it turned out that I had a lot of antiACH receptors antibodies. So, then the journey began with my docs. Luckily I have a fabulous neurologist that specializes in MG and things have been OK since then. My life is totally different and I can’t do many, many of the things I enjoyed doing previously. But I’ve to had any crisis or any bulbar symptoms other than some slurring of words when I did tooo  much.

    Since my mom died of MG in 1995, I was pretty worried about my diagnosis but my neurologist said treatment options are very different than they were nearly 30 years ago and that what my mom went through just doesn’t happen any more.

    Thanks for asking!

    Frank

  • michael-morris

    Member
    March 8, 2023 at 3:21 pm

    I was having dinner and my tongue just wasn’t working right. It got in the way as I swallowed.i coughed a few times and one eyelid drooped. Something was going on so we got in the car and drove to the er. They ruled out a stroke. Did lots of tests and had a neurologist examine me. No diagnosis but told to follow up with a neurologist

    Things didn’t get better and during a zoom meeting with my family doctor he said all my symptoms sounded like mg. He did a series of blood tests and yes it was as mg It only took a few weeks to get the diagnosis so I feel I was lucky

  • lynn-swenson

    Member
    March 8, 2023 at 3:31 pm

    I have never had a lot of stamina. It seemed I would tire long before others would. I came to really realize something was going on when we were standing at the window watching some planes in the sky. I saw 2 of everything!  After I was diagnosed I happened to be sorting pictures and came across a photo where my eyelids were definitely different.  It had been taken 30 years before—all that time not knowing I had MG!

  • craig-whitney

    Member
    March 8, 2023 at 3:59 pm

    Hindsight is 20/20 in my case, as seems to be true with other folks who have posted in these forums.  Double vision after a couple of days finally forced me to  go to the ER, tests showed no stroke, and a (hospitalist) neurologist did the ice bag test.  Finally, a diagnosis.  Blood tests confirmed it two weeks later.  The weeks (months? not sure, now) of debilitating muscle weakness that preceded this, I passed off as just part of getting older – – the diagnosis came shortly after my 75th birthday.  It’s obvious, now, that my MG symptoms were actively signaling trouble with my health.

  • diana-l-ramsey

    Member
    March 8, 2023 at 6:13 pm

    My cardiologist suggested I see an MG specialist who sent me to a neuro-opthamologist for a diagnosis, after testing sero-negative. I have two different kinds of double vision so I’ve been dealing with it for years. One kind of the double vision can be corrected with prism glasses, the MG kind, cannot. I have mild MG symptoms, and sometimes question if this is the correct diagnosis. The meds have nasty side-effects and I see that people on meds still struggle with bothersome symptoms.

  • david-s

    Member
    March 8, 2023 at 6:45 pm

    My DW and I travelled Full-Time in our 42′ Diesel pusher pulling our towed all over the US visiting everything we could.  Museums, battle fields, mountains and deserts.  We enjoyed this life-style for about 8 years.

    We broke down camp and hit the road to our next destination, which was Cottonwood, AZ, to Work Camp for 3 months in a beautiful desert valley.

    Travelling North out of Phoenix you must take I-17.    This road has pretty  a steep long grade and lots of twisties.  Trucks often slow down to 20 to 25mph going up that long grade on this Interstate Highway.

    About 1/2 way up the grade I got severe double vision in lots of traffic.  I made it to the campground, using one eye only, and hooked up electricity and power to the coach, then told my wife.  We left immediately for the VA Hospital in Prescott, AZ and was diagnosed with 4th Nerve Palsy.  Went through a bunch of tests and they released me.  At this time I was also experiencing extreme fatigue and a general out-of-body feeling. I was diagnosed with severe siusitis althugh my sinuses were clear and given antibiotics. Less than a week later, I again went into the VA  ER due to again extreme fatigue and a feeling that I was watching life go by in slow motion in real time.  I also developed speech issues when stressed along with hand tremors.  Was wearing an eye patch by this time.  I again was released after some more tests and IV. being told that I was most likely having a mini-stroke. The ER told my wife to call 911 if my symptoms worsened, as I would most likely be having a stroke..  During this time I was also seen at the local Hospital ER.  Was seen by a neurologist who said I most definitely was NOT having a stroke and who sent me home again.

    About 2 weeks later, I again went to the VA ER and again, was released after a bunch more tests.  Interestingly, with rest comes a bit more normalcy and the extreme fatigue, tremors and speech fade somewhat.

    I got a referral appt. from the VA for a local ophthalmologist.  He was the first one that put the label MG next to my name and suggested that I see a Neurologist ASAP.

    I could not get an appointment either through the VA or my then civilian health insurance, in less than 4 months.

    Long story shorter, so packed up and DW drove from Prescott, AZ to Houston, TX.  The following Monday morning I presented myself to my PCP during Sick Call at my local VA Clinic.  She scheduled blood tests and made a referral to a VA Neurologist two weeks+/- later.

    More tests including EMG and I was diagnosed.  My medical file grew to about 3″ thick.   That was 2019.

    Still undergoing treatment with Mestinon, Imuran, Prednisdone and monthly IVIGs.

    During the time between the onslaught of MG and my diagnosis, we discovered many Neurological disorders that could account for my symptoms.  We were eyeing Parkinson’s , MS. ALS,  MG and others.

    Scott

  • jonathan-a

    Member
    March 9, 2023 at 1:24 am

    I know the exact day.  About 5:30 am on July 25, 2019.  I needed to go to the end of my street to switch the metal pull up gates  (one out and one back in) at the concrete irrigation box  … to divert the west bound ditch water to the south bound ditch  water  to go to my street of yards.  My fingers were too weak to pull up the metal slide (about 18″ by 18″)… so I jiggled right side with both hands  … then left side with both hands … and repeated left side  and right side of the metal slide constantly pulling up and out of the vertical slot for about ten minutes.

    Drove back to my house at street end … my legs were very weak, as well as my fingers and sore arms  …  and needed to go back to bed.   It took a couple minutes to turn the doorknob to my front door, as I had no FINGER  GRIP  STRENGTH, to grab and turn the now slippery round metal knob to open my door.

    Then the next couple days  …. the eye problems started … when I was driving at night.  Droopy eyelids, two eyes competing with each other to see who was THE BEST, and every street light was a CHRISTMAS STAR with a dozen rays of light hitting my car’s windshield, like the covers of one CHRISTMAS CARD artwork.  It was hard to drive.  Right eye closed, right hand driving car, left hand and fingers holding left eyelid open more to see.

    So I called C—- Heathcare. Earliest appointment was August 9th, 2019 with an NP.  For 6 months of C—- and their referrals got NO DIAGNOSIS.  So in utter DESPERATION, went to the URGENT CARE CENTER attached to a hospital.    That first hospital gave me a CODE RED, three PNEUMONIAS,  in their ICU, and a $1400 late night ambulance ride to a second hospital.  Three weeks later, after continued doctors failing me at the second hospital, I was finally diagnosed by a third floor nurse at the SECOND hospital on March 24, 2020.  For EIGHT LONG SUFFERING MONTHS, I got every single MG symptom, and EVERY DOCTOR and REFERRAL, as well as two months in the first two of five hospitals of 2020 failed me.   The first hospital within 30 hours gave me a CODE RED. I died of ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to an OVERDOSE OF ANESTHESIA  … given to an undiagnosed MG patient. They did not like my moving, choking, staying on my side, and phegming during X rays  .. so they gave me a sedative OVERDOSE  … to have me stay put for MRI and CAT SCANS …. as they assumed TOO, that I had a BRAIN STROKE or TOXIC METAL POISONING  .. but didn’t.

    The third floor nurse recognized all my MG symptoms, as in her career, she had had a couple MG patients on her floor.  She talked the hospital into doing a Neuro- Consult, Thymus test, and three antibodies tests.   I was so SERO-POSITIVE .. that they repeated the tests  … thinking they were WRONG.  I had five days of five hours of IVIG  …. and have been stable and in REMISSION since I left the fifth hospital on BLACK FRIDAY  November 27, 2020.   Taking same dosages of CELLCEPT and MESTINON  … without issues.   They started me on a high dose of PREDNISONE along with STATIN drugs  … and that gave me MEDICALLY INDUCED DIABETES II,  which my new endocrine doctor got tapered  … so that is in REMISSION too.

  • lynette-wilson

    Member
    March 13, 2023 at 8:53 am

    I was walking home from our shops in Leeston NZ I found my eyesight didn’t seem right. When I got home I noticed my one of my eyelids was half way down. Rang Dr next morning which was a Monday. He thought I had had a stroke at the back of my eye.He said I needed to go to hospital straight away. Daughter took me there was a bed for me. After three days bloods test MRI and other tests. The neurologist said he was sure I had MG. Optical. That was Dec 2020. At the age of 76 Been on Prednisone and pyridostigmine ever since. Started at a high dose. Went down but back on 120mg & prednisone 10mg unable to go any further down as I have it returns. Eyesight cannot get my glasses that I was prescribed right. Never wore glasses before this MG started.

  • sharon-haw

    Member
    March 23, 2023 at 3:31 pm

    20 years ago, I moved back to my home city, with a recurrence of allergy symptoms, sinus and lung infections, and new trouble climbing stairs. A lung function and stress test revealed that I tire sooner than normal when exercising but there was no follow-up. In 2018, I fractured my ankle and was off work for 3 months. 4 days after I returned to work, at 3:30 pm, I started sneezing and had profuse nasal discharge, which subsided after an hour. I noticed my left eyelid was drooping a bit. Later that night, the double vision started. I saw my optometrist the next day, who suspected I might have MG but referred me to an ophthalmologist just in case it wasn’t MG, and advised me to see my doctor asap. After ruling out several possible conditions, my doctor also suspected MG, did the ice test and blood tests, and referred me to the rapid response neuromuscular clinic attached to a local university. Further blood and muscle stimulation tests confirmed I had generalized MG. It took only a month from onset to diagnosis. The neurologist felt I probably had MG lurking in the background for most or all of my life. I realized in hindsight that I eat slower than most, heat saps my energy and my family has a lot of autoimmune conditions.

Log in to reply.