Viewing 28 reply threads
  • Author
    Posts
    • #17885
      Jodi Enders
      Keymaster

      What “D symptom” of Myasthenia Gravis would you love to learn more about going into 2022?

      • Dyspnea 
      • decrease in energy
      • dysphagia
      • drooping eyes
      • decline in weakness
      • diplopia
      • dysarthria
      • double vision
    • #17898
      ChrisM
      Participant

      Decrease in energy

    • #17903
      John Gore
      Participant

      Decrease in energy and the uncertainty of  when it occurs.

    • #17906
      KATHY Lopez
      Participant

      Decreased energy, dyspnea, dysphagia.

    • #17907
      John Ulfelder
      Participant

      Ptosis (drooping eyelids), They seriously interfere with my vision and are not responding to medication. Can’t drive safely. Have to be careful when walking.

    • #17910
      paul spychalski
      Participant

      double vision

    • #17917
      Lou Venema
      Participant
      • <span data-preserver-spaces=”true”>decrease in energy – Why does it happen with no warning</span>
      • <span data-preserver-spaces=”true”>drooping eyes</span>
      • double vision My left eye was the original problem. Now my right eye is stating to twist, just a tiny bit. That means sometimes I see stuff in 3D.
    • #17928
      S. Green
      Participant

      drooping eyelids and double vision please.

    • #17934

      My husband had left eye droopy lid at first , double vision , now both eyes are affected ,, lid drooping , double vision , depth perception affected . Dizzy and nausea . Cannot drive , has to be super careful walking .

    • #17947
      Amy Cessina
      Participant

      Yes dizziness, they don’t talk about this much but due to vision issues.

    • #17975
      paul spychalski
      Participant

      Double vision, I need a walker. TIA

    • #17980
      Ms.Will
      Participant

      Dysphagia.  I had my esophagus dialated four months ago and my vocal cord injected.  I’m wondering if the dialation could turn into a common procedure or if its something anyone else has gone through.

    • #17981
      Norm
      Participant

      Dysphagia.  I started having trouble swallowing in 2014, but diplopia, ptosis, and an MG diagnosis did not occur until 2019. Has this happened to anyone else?

    • #17984
      CathyF
      Participant

      Dysphasia and Disphonia

    • #18594
      Amy
      Participant

      Hi Jodi – i am particularily interested in learning how to combat the general fatigue I am feeling and ways to reduce the stress of having @ chronic illness.

      I do have a question whether tinnitus is a symptom of MG? If it is, has anyone found relief from it?

      Thanks AmyB

      • #18610
        Norm
        Participant

        Caffeine helps. Taking the equivalent of four cups of coffee mid-morning usually keeps me energetic through the afternoon.

        I have not had tinnitus with my MG, TGFSF.

        • #18649
          Jonathan A
          Participant

          I need  my Caffeine too,  but hate its bitter taste, or was it just grandma’s FOLGERS ?  So I usually have to take PEPSI or M&M’s in the morning to get my Caffeine to get awake, enough to make it through the first part of the day  …but you must stop by NOON.

          I am new into MG and have never taken any pills or had MG before.  But I am in REMISSION NOW.   But my problem is ACUTE ONSET INSOMNIA.  I have never ever had that problem before, and no one seems to talk about it.  It takes hours to fall asleep, but you wake up too early, and it takes hours again to fall back asleep, if at all.

          Some people say maybe it is the side effects from 11 medications, CELLCEPT  (2000 mgs daily) and MESTINON (180 mgs daily).    …. or is maybe INSOMNIA is a side effect of having MG ????

          I did get referred for two “IN LAB” sleep studies, but they never talked to me. I gave them my illness info and my meds list,  but I don’t think that they EVER MET a real MYASTHENIA GRAVIS victim before.  They just wire you up and put you to bed.  My report said I got no minutes of REM the first time and 11 minutes of REM deep sleep,  the second night.  But it did confirm that I could not get asleep, slept ALWAYS on my SIDE,  and breathed in and out through my nose, and NEVER SNORED.  They billed my medical plan for $3600 per night  … and no answers.

           

           

        • #18658
          Alan Bridle
          Participant

          I  sympathize with Amy because I also have severe tinnitus on top of my gMG.  I do not however think MG can have caused my tinnitus which began some years before any of my MG symptoms appeared.

          My tinnitus has always varied with my level of tiredness.  I suspect this is because my “mental filter” that my brain uses to screen out my tinnitus signal requires some mental effort that is harder to exert when I get tired.  The extra tiredness I experience with MG may have worsened my awareness of the tinnitus, so I could say MG makes my tinnitus harder to tolerate.   But I do believe it is mainly because I am now feeling more tired more often.

           

           

           

        • #18668
          Amy
          Participant

          Hi Alan,  you are absolutely right about the tinnitus.  I barely notice it in the morning, but by the afternoon if I am tired it is a dull hissing sound that just gets louder as the evening wears on.  Just like my eyesight.  I just can’t read anymore in the evening.  I have no control over my double vision, even with prisms.  My Mestinon lasts maybe 3-4 hours per 90 mg.  I take 360 mg per day, plus 2000 mg of cellcept.  The further I get along this road the more fatigued I get.  I see my  neurologist next week to look at my 6 month cellcept use, which I don’t think has done much for me other than controlled some of my skin issues.  This really isn’t living. I hope you can find a way to live with the tinnitus.

    • #18606
      Carrie McDade
      Participant

      Dyspnea. I have times when I’m standing in the kitchen preparing food when I feel as if I’m running a race. Breathless, rapid heart rate, and sometimes if I don’t go sit down, I feel faint.

      My cardiologist has prescribed a beta blocker, not for hypertension, but to slow my heart rate. I also drink 10 glasses of water a day per instructions from cardiologist.

    • #18609
      David S
      Participant

      I do not know if my Double Vision is the cause of this, but I often have problems navigating through people.  I see movement out of the corner of my eye or directly in front of me.  Things seem to jump out at me and I become disoriented and don’t know which way to go.  Very often I must hold on to my wife’s arm and allow her to guide me through people.  I also feel like I am living in a movie much of the time.

      Scott

    • #18634
      Ronald E. Clever
      Participant

      double vision

    • #18648
      Jonathan A
      Participant

      My answer would be  DISCERNING  !!!    I am finally in REMISSION….    I am HOME….  I have a computer now to start GOOGLING ….       Also, with the help of ALLSTRIPES and also PICNIC HEALTH RARE DISEASE  RESEARCH GROUPS,    …..   they have been able to find my countless medical reports, tests,  consults,  and hospital guessing games,  to me to have and read,  after I searched, on my own,  endlessly for 11 months.  BUT WHERE IS THE TRANSLATIONS  from medspeak to layman ENGLISH???   that I need to DISCERN  ???

      So I know now and can read what they did to me, what they drugged me with (what and why MORPHINE, ASA,  and FENTANYL),   what is a CODE STROKE and why, and how it was that I ended up being transferred to five different hospitals in OVER FIVE MONTHS.  What does ICU, PACU,  FOLEY,  and  LTAC mean ???

      So, I am still DISCERNING and GOOGLING LIKE MAD,  as I don’t know what most of the words you listed above,  mean in ENGLISH.  But the   WORDS look familiar from all the hundreds of report pages, that I am now reading and circling in RED,  all the WORDS to google.   I know now that the droopy eyelids, means closed eyelid ???,  and is called  PTOSIE ?? but why  don’t doctors speak ENGLISH ?    Also I I have never EVER before,  had a drug prescription ever written for me by ANY DOCTOR,  before I got MG,  so I never really understood why EVERYONE keeps saying that the drug prescription writing of all doctors is SHITTY and UNREADABLE.

      Now I know what they meant, as even a magnifying glass does not make it much better to read those child scribbled, consulting reports for me.  Fortunately some reports are readable, but MISSPELLED, and say done by a DRAGON, at the bottom.   About the only legible words, that those doctors wrote,  are the date and “IVIG”.  So I don’t know what your “D” words,   ….   except decline and decrease,    …. mean in ENGLISH.  SORRY

      • #18652
        Carrie McDade
        Participant

        Hi Jonathan,

        I can answer a few of your medspeak questions: morphine is a painkiller, as is Fentanyl (10 times stronger than morphine, I think). ASA is acetyl salicylic acid, or aspirin. ICU is intensive care unit, PACU is post acute care unit, LTAC is long term acute care. Foley is a urinary catheter. Code Stroke is perhaps what I know as stroke protocol, where a certain set of procedures is done to see if you’ve had a stroke.

    • #18654
      Heather Kaye
      Participant

      The decrease in energy is the one thing that really affect my quality of life.I can be out and about leading my life and the off button can occur at any time and without warning.

    • #18655
      Kelley
      Participant

      Dysphagia

      Disarthria

      Dyspnea

      Disphonia

       

      • #18656
        John Palatucci
        Participant

        Decrease in energy and onsets of sudden muscle weakness

    • #18669
      Alan Bridle
      Participant

      Hi Amy –

      It has taken me years to understand and accept that the “signals” from tinnitus are not going away.  In fact mine has steadily worsened with time (I get “bursts” of whistling/screaming that can last for just a few seconds or for several minutes, but never – yet – for hours).  The only “cure” I have found is that when I am rested I can manage to pay no attention to the “noises off” while I focus my mind on something else.  This makes it harder for me to hear “unexpected” inputs like a question from someone in the room, and it makes me appear a little deaf to friends – despite also having hyperacusis  (over sensitivity to loud noise).  But I am aware that I have now built a sort of mental filter for my tinnitus that it takes effort for me to keep in place.   By the end of the day it can fall apart so I can have vision issues and tinnitus noises to contend with simultaneously.

      At that point the best answer – for me – has become “music therapy”.  I have always enjoyed listening to certain types of music, both classical and jazz, and I tend to end my day doing that now.  Listening to music that I know and love is a way to push tinnitus noise into the background without so much effort and I do not need to open my eyes to experience the goodness that favorite music can bring.

      I was also in an ICU on a ventilator for nearly two weeks in myasthenia unable to speak or move much and blinded by ptosis for a lot of that time.   That remade my notion of what is “really not living”.  Ever since that, a day that I can see the sun come up and my wife give me a smile feels more like a gift for me to try to make the most of.   There are many things I have to do differently now,  and not getting too tired to function on any given day while still rehabbing physically is a new challenge.  But life is more challenging as we get older and most of us eventually need to learn to live at a different pace.  MG makes that  just more so for us than for others.  I try harder now to make something good happen to me each day so I do not start down the road of getting exhausted just by worrying about why things are not better for me.   Music that has special meaning for me helps me to do that.  I hope you will find something that will work like that for you.

       

      • #18672
        Amy
        Participant

        Yes Bravo Alan,

        Thank you for reminding me to look for the positive and live the best life I can.  Some days it is just harder than others.  Yesterday was just one of those days.  Amy

    • #18671
      CathyF
      Participant

      Bravo Alan!

      • #18674
        Alan Bridle
        Participant

        So many posts on this topic have put “decreased energy level” at the top of the list of issues with MG.  I expect we all have good and bad days with MG so we need to figure out which kind of day we are having and adjust.  I got physically deconditioned in the ICU during mt “acute myasthenia crisis”.  I have had balance problems, needing a walker when tired near the end of my day.  One day last week I woke up feeling good and found my balance was super so I thought “wow, something really kicked back in for me”.  I was able to walk a mile on a pretty spring day using just a cane. I felt great, hoping I had turned a permanent corner.  Next day I almost fell over in the bedroom getting my pants on, staggered all day, ended it exhausted with blurry vision (ptosis gives me different fields of view with left and right eye so my brain gives up trying to reoncile the visual fields so I “see” a blur).

        I felt angry because the day before was so good but listening to some favorite music calmed me down and I could be grateful for how I enjoyed the good day.

        I reckon our “decreased energy” problems mean we have to learn not to waste what energy we have and to make our good days – or good moments in normal days – count as much positive as we can.  If I feel good I now try to do something I can savor and enjoy in the moment but not in a way that risks making me too tired to cope with the rest of that day. A nurse in the ICU told me “you must learn to pace yourself differently” to deal with MG.  I now understand what she was saying!

        I take 60 mg Mestinon four times a day and Prednisone 20 mg once (reducing I hope to 5 mg longer term), also 50 mg Imuran twice a day and I have IVIG every six weeks.   But now I can chew and swallow properly again I think music I enjoy can be as important to my state of mind as these drugs are to my muscles.  Music also helps to “drown out” my tinnitus and a symphony or piano recital before bed helps me sleep better.   I had bad insomnia before my MG crisis hit but now I am sleeping well everything else is  (slowly) improving.

        The ICU time taught me to be grateful for many things I took for granted before.  I hope you can find how to make your good days carry you forward too as good thoughts once or twice daily can be good  medicine!

    • #18675
      CathyF
      Participant

      Alan, Thanks for sharing in detail and for your positive, grateful thoughts.

      • #18676
        Alan Bridle
        Participant

        You are very welcome.  I have found it helpful to read how others with MG cope with this condition and its many frustrations so I am happy to try to contribute here as well.

    • #18683
      Andy Coyne
      Participant

      Dyspnea

    • #18686
      Chuck Hurley
      Participant

      More results on diplopia, particularly the progression from ocular MG to general. Many thanks!

      Chuck Hurley

    • #18695
      Douglas Manning
      Participant

      What great posts highlighting just how bewildering this condition can be! I am trying to conjure up a “D” word for the invisible nature of the disease. Maybe its “Doesn’t get seen by most people”? How did I change from hiking, running, lifting, and standing for hours at a time and then suddenly in the span of onset and the first “crash” seemingly lose it all? How many times have well-meaning friends and family said something akin to “Well, you don’t look sick at all!”? When the weakness hits you and you can no longer bound up several flights of stairs, or you go to shake hands (pre-pandemic of course) and “miss” because you reached for the wrong hand? I’m sure you can insert an episode for each of the “D’s” when you were met with a perplexed look because your look fine, not ‘sick’ at all. So, as we all manage our personal journeys (I also use music therapy to tame tinnitus – someday this will be listed as a symptom), how do we kindly and calmly educate those who are well-meaning?

    • #18749
      Sharon White
      Participant

      Drooping eyelids, double vision, decreased energy

    • #18806
      Sheila Troiano
      Participant

      Another ” d ” word…disappointed. I’m disappointed in some family members lack of understanding. They don’t get that I my have said I would like to …such and such on a particular day. The day comes and I have a ” low” day and am physically unable to do what I thought I may be able to do.  Most people I work with seem to be more understanding. I do work with nurses, doctors , social workers and therapists. You wouldn’t believe how many of us are suffering some type of autoimmune disorder. We are compassionate to each other and aware of some of our limitations. I wish my immediate family would ‘ wake up’ and be more supportive. It would be nice if even one of them would have watched the video that one of you so nicely shared a while ago about a day in the life of living with myasthenia. . I e been living with myasthenia for three years plus now. Sorry to say, my family still doesn’t get it.

Viewing 28 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account