• First Signs of MG

    Posted by BioNews Staff on July 9, 2022 at 3:36 pm

    The first signs of MG are different for everyone. I first noticed something was off when I couldn’t keep my mouth closed to swish water around after brushing my teeth. No matter how hard I tried to keep my lips together, water would dribble down my chin.

    At the time, I blew it off. I thought I was tired or possibly my allergies were acting up. But now I know it was the first sign of MG’s weakness.

    What was your first sign of MG? Was it facial or body weakness? What did you think could be causing it?

    isy replied 1 year, 4 months ago 29 Members · 38 Replies
  • 38 Replies
  • Dave Hall

    Member
    July 13, 2022 at 9:35 pm

    Several years before I retired, I bought a small farm outside of Houston Texas.  I soon had sheep, Nubian dairy goats, egg laying ducks, a couple donkeys, a pair of horses.  My dream was to get licensed so I could sell my goat milk cheese at a local farmers market, along with my duck eggs. To get the license I needed a micro dairy.  My wife found a used micro dairy for sell, only ninety minutes away.  I made the deal.

    I had a friend ride along to help load the dairy.  On the way to pick it up, my eyelids kept dropping.  I wasn’t falling asleep as I was talking with my friend but could hardly keep my eyes open.  Anyway, we picked up the dairy and unloaded it into my barn where I had built the cheese room.  Then I made an appointment with my GP.  I explained that four months ago, I had taken wife out for a nice steak dinner but could only eat one half, my jaw muscles got tired and I could not chew any more.   A couple of months later we went out for Sunday brunch at a nice fried chicken buffet, but I could not chew the chicken.  Then I told about picking up the dairy.  He just looked at me and said “Myasthenia Gravis”.  I replied “back at ya doc”.  Anyway, the blood test confirmed his diagnosis.  He had seen two MG cases back when he was an intern.

    On the one hand I feel very lucky in getting an accurate diagnosis so quickly, especially in rural Texas.  The downside, I no longer go to the farmers market to sell my duck eggs and I never got the license to sell my cheese.  One retirement dream unfulfilled.  Anyone want a micro dairy?

  • Norm

    Member
    July 13, 2022 at 9:41 pm

    Blurred vision was the first sign, although it was really double vision due to my eyes not tracking together. I had my eyes tested for new glasses and gave a couple of optometrists a lot of grief.

    Then droopy eyelids. Then really debilitating double vision. I was sent to a neurologist who recognized MG’s symptoms.

    But a couple of years before all of that, I had all of my teeth extracted. Subsequently I had very little chewing strength. I still wonder if those extractions were the straw that broke the camel’s back (i.e., my neuro-muscular system’s proper functioning).

  • Jerry Johnson

    Member
    July 16, 2022 at 12:15 pm

    My first sign was right eye drooping. I thought I just had a cold settled in there or possibly my allergies. I went to the ER after a couple of weeks passed. They admitted me to rule out a possible stroke.

  • David S

    Member
    July 16, 2022 at 5:15 pm

    I too had the lip issues.  I could no longer whistle and had a heck of a time playing my harmonica – blues style.  I had also taken pride in the shinny finish of our 42′ diesel pusher and would weekly clean and polish it.  I recall having some problems washing the coach as I was running out of energy.  It would usually take me an hour or so to wash it then a couple of hours using a polymer coating to make it shinny.    An hour here and hour there.  I got to the point where I could only wash about 1/2 of the coach at a time before a rest break.  Before, I could wash the whole thing and get some polishing done too in a couple of hours.  We also rode our bikes, 3 to 4 times a week, 17 to 20 miles each time and I recall becoming tired and having to press harder to get the miles in.

    Once double vision hit, we immediately went to the ER and they diagnosed swollen sinus that placed pressure on my 4th nerve in my left eye and a possible mini stroke.  Had MRI and other tests that showed nothing.  I started to wear an eye patch and continued with my life.  I was in the ER two more times before I was referred to an Ophthalmologist who put a name to what was happening to me.  I recall being in his office for the second time in two weeks and him pushing his rolling stool away from me, raising his hands up and saying that there was nothing that he could do for me and suggested that I see a Neuro for diagnosis.  We were in Cottonwood, Arizona at the time and could not get a referral to a Nuero for at least 4 months.

    We packed our gear up in the motorhome and my Dear Wife drove us to Houston.  The following Monday I presented myself to Sick Call at my local VA Clinic, with my 3″ medical file.  It took some time waiting to see my PC but when we got in and she examined me, she requested a referral to a Neuro at Debakey VA Hospital in Houston.  I was seen within 2 weeks and after some more testing, I was diagnosed.  Treatment began and here I am today.  Stable…..

    Again in retrospect I was probably seeing the impact of the disease at least one year before being diagnosed.

    I would become fatigued and would write it off as old age.

    Scott

     

  • Michele Ayers

    Member
    July 20, 2022 at 8:38 pm

    HI

    droopy eye..especially left….closed by evening…too hard to keep open

    then double vision and worsening sight..blurry and need more correction

    new rx for glasses but already need a stronger prescription!

    rx usually lasts a year or two..this time only 4 months…is blindness a factor?

    some days I have no energy at all..none..other days are fine…

    lots of weight gain from incresased appetite with prednisone

    so, definitely that can be slowing me down…just feel sluggish

    belly pain and now headaches..but mostly stomach pain every day…bloated…

    can’t wear any tight clothes ..I feel like  asnowan

    the pills could be part of my problem..but I need to take them

    so..that’s my story…so far…

    anyone else dealing with stomach and bloating issues? it’s as thought I swallowed 3 bowling balls!
    thanks

    love to you all

    michele

     

     

  • Bill Suphan

    Member
    July 20, 2022 at 10:53 pm

    Double vision while driving with drooping of eyelids shortly thereafter.  I mentioned to my wife that the left side of my face was drooping and a little numb.  I went for tests to specialists who came up with various answers none of which were accurate despite their best efforts.  I had an annual physical with my PCP who had me follow his finger with my eyes and then stare at his finger which he held up high until my eyes finally failed.  He said I might have MG and sent me to a neurologist who ran tests and confirmed his diagnosis.  This is probably akin to most others in terms of what they have gone through to find they had MG.

    • paul spychalski

      Member
      September 29, 2022 at 4:06 pm

      What tests did the Nero. do to find out it was MG?  Thanks

      • Jack Stayton

        Member
        September 29, 2022 at 8:24 pm

        Have him/her test for Achr.

  • John Siberski

    Member
    July 22, 2022 at 8:58 pm

    First signs were ocular with diplopia when walking in cold/heat or driving when very fatigued.  In retrospect I think I stopped running early in the course when running stopped being fun (after 26 years), I got much slower than I had been, and had to stop on hills on my usual routes.  Then walking uphill became a significant problem because of leg weakness.  One day it hit that I had MG.  This coincided with a friend watching me walk up a hill and becoming concerned that I had had a stroke.  The following day I stopped a neurologist in the hospital (I was in active medical practice then but am now retired) and asked if I had MG.  He looked at a few things in the hall, suggested I did, and  arranged for single-fiber EMG at another hospital.  At the time the EMG was borderline but, along with the symptoms and response to Mestinon, it was a fairly strong diagnosis.  After moving from D.C. to Boston I found a new neurologist.  Had a second single-fiber EMG.  There was no equivocation whatsoever.  Have been on mycophenolate 2000 mg daily for the past three years with good result.  Able to decrease the dose of Mestinon significantly. Am in a position that I can plan and prepare for those times when physical demands increase such as lecturing etc.  And there are a few things I know I no longer can or want to do.  I rather doubt I will ever go to another college football game unless I have a seat in the press box or a lot of other things.

    • Jack Stayton

      Member
      September 29, 2022 at 8:38 pm

      More: Acetylcholine Modulating Modulating, Binding and Blocking (AChR. Also Musk AB.  These are the definitive tests for MG.

  • pmdwarrior

    Member
    July 22, 2022 at 10:01 pm

    Five years ago I  began having some spontaneous muscle contractions and “release” in my forearms and knee/thigh/buttock areas. Just touching my forearm could induce muscle contracting rippling. Then months later my legs got weak and I had difficulty walking and climbing up steps.  I was tired. I could no longer do International travel. I did not experience any facial, oral, or ocular difficulties.  My PCP referred me to Neuro and tests revealed a positive striated muscle antibody and an acetylcholine receptor binding antibody. I also had an increase in my Calcium level which subsequently was diagnosed as hyerparathyroidism and I  had surgery to remove the benign tumor.

    Meanwhile, I began Mestinon and had great difficulty with terribly blurred vision that made driving difficult. My muscles were still doing their contractions and I remained tired.  After increasing Mestinon to no avail over about 2 years,  I stopped it. I asked for a Muscle Neuro specialist in the department. (I am a Kaiser patient.) So tests were repeated with my new doc (yes, they confirmed the original MG diagnosis) and 3 years ago I started on Mycophenolate 2 gms daily and 2X monthly IVIG (80 gms total). Big improvement in about 3 months as my contractions left and muscle strength improved. For 2 1/2 yrs I remained on this regimen but I  began having more tiredness overall and especially in my legs. IVIG was increased to 4X monthly (160 gms total) but there was no improvement overall. I requested a new treatment plan with Rituximab. I just had labs in preparation for that infusion and hope to start it sometime in late August.

    My hope is the mono clonal antibody will suppress my immune system further so I can have a life back without excessive fatigue and legs that work so I can walk more than short distances. It’s been a pretty rocky journey and a total reversal of my former active traveling lifestyle.  Big adjustments as you all know. Thankfully I have Kaiser so I am not monetarily constrained with treatment options.

     

     

  • David S

    Member
    July 22, 2022 at 10:13 pm

    It is fortunate that that you found the resources necessary to receive effective treatment and you were able to identify it relatively early after your Hit.

    I too was fortunate, as it was diagnosed within two months of my Hit.

    This gMG thing is not fun to live with.  We must pick the times where I wish to be active, often days in advance.  My choice of activities have also changed dramatically.  Sometimes all I can do is get to the local grocery store and steer the cart, while my DW puts stuff in.   I am also the grounds keeper so that requires me to do some yard work every day.  Some days one hour is enough other days I can sneak in 3 to 4 hours of light work in an 8 hour day.  However, on the positive side, we are getting ready to take our second cruise this year.  There are elevators everywhere to get you up and down to a variety of activities.  Plenty of seating from stem to stern, any deck, to rest.

    I apologize for getting off-track a bit.  I do not wish to take this thread sidewise.  It seems the earlier it is diagnosed and treated, the earlier  the progression of symptoms have slowed or stopped.

    Good day,

    Scott

     

  • Tom A

    Member
    July 23, 2022 at 4:23 am

    Like so many others my first signs of MG were ocular. One eyelid drooping uncontrollably (I held it up with one hand while driving with the other hand) and horrible double-vision. I presumed I was having a stroke, went to the ER, was admitted and had a complete workup including MRI of the brain late at night. The neurologist came to see me the next day and said I did NOT have a stroke. I was shocked, what else could it be? He said I needed to see a neuro-ophthalmologist right away. The neuro-ophthalmologist immediately diagnosed MG. I was lucky, very lucky, to have a quick, accurate diagnosis. A year later, still on predinisone, now down to 4mg per day, I am in remission and hoping it stays that way.  Tom

  • Michele Ayers

    Member
    July 26, 2022 at 5:29 pm

    Thank you Jodi for your response…

    I just erased my reply as I found myself complaining too much. I appreciate everyone on this site sharing as it makes me not feel alone…

    you know, I was able to go see friends in The Sound Of Music a couple of days ago…and I was applauding and had to stop and rest my arms…and then start clapping again…and then stop…I couldn’t keep my arms up…is that part of it? or is it just poor upper body strength associated with age?

    it surprised me….but the show was fun! and I am grateful!…and for this site!…thank you all! and thank you Jodi!

    Sincerely, michele

    • pmdwarrior

      Member
      July 27, 2022 at 12:23 am

      Hi Michele,

      Ah, yes, tired arms. Same for me in the beginning of my MG journey. I get it about clapping. That happened to me at the symphony and other events. Along with my weak legs, I thought I was really loosing it! Before diagnosis/treatment I also couldn’t lift things like my full tea kettle  and my stoneware dishes, small sacks of garden soil, even tall glasses of beverages.  Weak arms as well as my legs. It was pretty discouraging!   My arms since treatment are still not the tough, “can pick up anything ” strong they used to be but treatment has really helped.  Not near as weak as my arms used to be.  However,  I just incorporated this into my life and ask for help when needed with heavy objects.

      Best,

      Patricia DeMore

      • Michele Ayers

        Member
        July 28, 2022 at 7:21 pm

        Thank you Patricia! I really appreciate your response.

        Yes, I used to also “pick up everything” being a teacher…chairs, small childnre…

        and working for Pepsi…building towering displays in markets

        yesterday people were clapping for me!..singing on the nursing home circuit…want to do it as long as I can because I understand a lot of people can lose their voice and worse…my piano playing friend and I had so much fun…my first singing teacher turned 100 and it was where she lives now…I move from denial to YIKES..and as things are increasing I”m in YIKES mode more often..not trying to be funny..just scared I guess…thanks for your kind words…I wish you the best Patricia! Hugs, michelep.s. does your treatment involve weight lifting?

        also I have experiencing cramping in my feet and toes..never had that before..is it related?

         

  • kenneth j. bialkowski

    Member
    July 27, 2022 at 2:21 pm

    My first symptoms and symptoms to this day involve speech and swallowing difficulties. Contolled for the past 3 years with low dose Prednisone and weekly Cuvitru sub-Q. The treatment doesn’t eliminate the symptoms but keeps them at a level where I can function.

  • Pdro Hrtdo

    Member
    July 27, 2022 at 5:35 pm

    After a month of working hard at a new job I felt very tired, I woke up everyday feeling like I had a hungover. After a week my arms were sore, they felt like I had done intense exercise (I didn’t), then I had double vision. Glasses seemed to help for a week. After a month I had to stop working completely because my head got way too heavy for me to keep up.
    Two months after I was finally diagnosed.

  • Charles Karcher

    Member
    July 27, 2022 at 7:11 pm

    My first indication was double vision.  I went to my optometrist who referred me to his affiliated ophthalmologist who diagnosed me with 4th Nerve Palsy.  The Opthamologist scheduled  a followup appointment for a month later.  Before that appontment my speech became extremely slurred and my swallowing deteriorated.  I went to the ER and was admitted and fortunately diagnosed immediately.

  • Debbie Butler

    Member
    July 27, 2022 at 7:25 pm

    Hi all, I woke up on New Year’s Day with double vision (no I hadn’t been out the night before … LOL).  I had an eye appt the next day and she couldn’t examine me with my eyes all over the place.  She called a neurologist that was on-call that day and off I went.  He walked in the office and I thought I was looking at Doogie Howser.  He had on a Looney Tunes tie and matching socks and looked like he was about 12 years old.  He had just graduated from Med School and just started working in this practice.  He examined me and said he thought I had Myasthenia Gravis, I told him that I can’t have anything that I can’t say.  He just laughed as asked my permission to call a colleague.  He made an appt for me at Wills Eye Hospital in Philadelphia.  So within a week I had a definite diagnosis … they did a Tensilon injection and the vision came right back.  I was put on a massive dose of Prednisone and it took six months for my vision to come back to normal.  Four months later I went totally limp like a dishrag, ended up in the hospital and had Thymectomy surgery … two months later I felt like a new woman.  I have had MG for 29-1/2 years, been hospitalized 4 times for IVIG.  I was on Prednisone for 13 years, now just take Imuran.  My last IVIG was 11 years ago and I am doing well.  My first year was rough, but I learned my limitations … I’m good for about 30 minutes and then I need to rest.  I mow my lawn (1/3 acre) and shovel snow in the winter.  I think half the battle is having a good, positive attitude.  I am 66 years old.  I have MG … it doesn’t have me.

    • Michele Ayers

      Member
      January 10, 2023 at 2:24 pm

      oh, my..thank you for the story of your journey and for your humor! and positivity!

      may I use your quote? “I have mg..it doesn’t have me”

      Thank you Debbie!

       

       

       

      • Debbie Butler

        Member
        February 17, 2023 at 6:35 pm

        Hi Michele,

        Yes you may use my quote.  I have never given in to MG until it kicks my butt and I have no choice.  As I said my first year was rough, in and out of the hospital a half a dozen times.  As soon as I learned my limitations (about 30 minutes) I was good to go.  I haven’t had any problems with my MG in I’m guessing about 15 years or more.  My biggest problem right now is I am going through skin cancer … in the last 14 months I have had 8 MOHS surgeries and 9 biopsies.  More biopsies coming up in about three weeks.  The cancer is mostly on my hands and the bandages are driving me crazy, but the MG is behaving itself.

        Good luck on your MG journey!

        Debbie

         

  • Michael powell

    Member
    July 27, 2022 at 7:25 pm

    My first indication was a severely watering eye like I had gotten into some allergen followed by a drooping eye.  After  seeing an ophthalmologist I went to my PCP who sent me to the ER thinking I was having a stroke. After a couple of days of tests the MG diagnosis was confirmed.

  • Michele Saulnier

    Member
    July 27, 2022 at 7:30 pm

    My first signs was losing my smile (MG snarl). Not understanding what was happening my then boyfriend (now husband) would call it my yucky face and we would both brush it off. I had also just finished college where I was a D1 athlete for 4 years and couldn’t understand why I was struggling keeping up in an exercise class (it was the late 80’s). I wasn’t able to keep my arms up in class or when washing my hair. After traveling to visit my boyfriend for Christmas he commented that it was getting worse. I made an appointment with my general practitioner in January 1990 and so thankful he diagnosed me right away. He referred me to a Neurologist who had me tested and confirmed the diagnosis. I went ahead and had a thymectomy in February of that year. It took me several years but eventually went into remission.
    When I experienced a resurgence in 2020, it was with double vision, a symptom I didn’t experience in 1990. This second time has been much different then the first time.

  • Philip Callas

    Member
    July 27, 2022 at 8:16 pm

    My first sign was a frozen left eye, my left eye would not move at all, I saw several eye specialists, nuclear specialists in vain, I went through several tests and nothing was found, finally my optometrist suggested I see a neurologist which I did and had the antibody blood test and was then diagnosed.

  • Keith R Anderson

    Member
    July 27, 2022 at 9:04 pm

    I believe my first signs occurred about 3 years ago. I was an avid walker, sometimes as much as 7 miles. I started feeling a tugging on my diaphragm causing me to stoop over and causing breathing problems. This went on for a year and then stopped. Another year passed and it returned but worse. Then my neck got involved, partially due to RA and I was getting more classic symptoms like swallowing and chewing. Finally my MD sent me to a neurologist and my concerns were validated. Mestinon seems to be handling the problem and I try and exercise daily along with oral exercises.

  • Jack Stayton

    Member
    July 27, 2022 at 10:49 pm

    I guess my first symptom was weak legs. I just dismissed it and went on with life. After something like a year I was driving home on a 4000 mile trip pulling my 5th wheel after a 7 hour drive. I got into heavy traffic and suddenly got double vision. I could not see the road nor the tons of red lights from traffic. I yelled at my wife (yes, yelled) and told her to grab the wheel and guide me to the first place I could pull out of one-lane construction traffic! We succeeded without a wreck. After some 30 minutes I recovered enough to get us where we could stop for the night. The next day I was better so continued 600 miles to home. I saw my Endocrinologist on my regular appointment. She recognized my symptoms and sent me to the neurologist who made the preliminary diagnosis and ordered tests for AChR. The tests came back positive for Binding, Modulating and Blocking antibodies. My neurologist immediately put me on Mestinon and referred me to a Neuro Ophthalmologist. She put me on Prednisone which caused me to develop diabetes. After she tapered me off prednisone she put me on Cellcept. The diabetes abated and I continue on Mestinon (4 per day) and Cellcept (4 per day). I continue my daily activities but do them more slowly. I have never had any more double vision but my arms and legs are weaker and fatigue quickly.

  • Fay

    Member
    July 27, 2022 at 11:48 pm

    First signs of MG for me was Palsy on the left side of my face. I woke with blurred vision and when I looked in the mirror I thought I must of had a stroke. Once I got the diagnosis it was still about 12 months before I got IVIG – Life changer it’s been about 10 years now and would have a fit if I was told I couldn’t have it any more, combined with Mestinon, Pred and Azathiaprine I am probably the best I can be. My eyes have definitely deteriorated but I have a collection of autoimmune conditions. Lupus, Neuromyatonia to name a few combined with being a Diabetic I never know what condition is making feel the way I do. Thankfully I work for a company that is supportive and allows me to work from home. I still get horrendous muscle spasms which can appear anywhere in my body but prior to IVIG I was useless.

  • MikeS

    Member
    July 28, 2022 at 2:26 pm

    Diagnosed 2 years ago.

    Most severe symptoms:  1st flare-up was ptosis and diplopia; 2nd was slurring; 3rd and subsequent were/are slurring and swallowing.  It seems to have settled on (unfortunately) swallowing/slurring going forward, with less severe symptoms attached (e.g., face muscles such as around eyes and mouth, eyelids, slight diplopia at edge of visual field, reduced stamina).  It’s the swallowing that put me in the hospital for the first time (last month).

  • John Siberski

    Member
    July 28, 2022 at 4:57 pm

    Diplopia.  Initially when very fatigued and driving or when walking distances in the cold.  With time the diplopia increased in frequency and took longer to resolve with walking.  Then difficulty walking up hills.   Began pyridostigmine at that point.  Several years of reasonable control with symptomatic treatment.  Three years ago had more difficulty with hills.  Began mycophenolate.  Good response but there are still limits, particularly at the end of the day.

  • RINA NEL

    Member
    July 29, 2022 at 3:15 pm

    First really strong sign was one evening in 2010. It was a Thursday and we were going on a motorbike rally the next day. I was sitting in the lounge and my husband came in from ouside. I looked up at him, heard the sound of a pitchfork in my ears and for a fleeting moment I had tunnelvision. Aftera few seconds it disappeared and I felt normal. Not really! I was soo sleepy and could not keep my eyes open but the moment I laid down to sleep I was wide awake.
    We went off thevnext day but then I couldn’t drink from a straw and whenever we stopped, I would fall down on the nearest patch of grass and tried to sleep.
    I checked myself in the mirror and saw that the right side of my face was drooping and my right eyelid would not lift!
    I went to see my dokter on the Monday, he booked me into the hospital and got a Neurologist to come and see me. I was wearing dark glasses now because my eyes could not take any light. I told her about the light-sensitivity and the eyelids that would not stay open but she said I had a stroke. I said no, this is not a stroke even though the right side of my body was now rather a lot weaker than the right side.
    It was only in 2015, after a long period of double vision that an eyespecialist diagnosed me and a huge growth was removed with the Thimus. It had already grown into my heartsak and I had lost 34 kg in the proses.

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