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    • #18536
      Christer Whitworth
      Participant

      65 year old white male. No health issues other than being a bit heavy and drink a little more than I should.

      Just some random thoughts as I try to assimilate this new reality. I have read that 50% of males develop worsening symptoms 5 years from initial diagnosis. I forget where I read this. Seems faintly encouraging but not if you are in the wrong percentile.

      I scheduled an appointment with my Ophthalmologist to explore doing a clear lens replacement to rid me of eyeglasses. I kid you not, but I developed double vision the day before my appointment. Not surprisingly, my doctor who it turns out specializes in MG quickly forgot about the initial reason for my visit. After some blood was drawn, his suspicion was correct. I go in for a CT scan to check out my Thymus in a couple of weeks.

      If anyone has insight to my questions, please weigh in.
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    • <div>My first episode started Feb 2 2022 and lasted three days. Since then, I have had no symptoms. I am having difficulty finding information that addresses the span of time between episodes. What would be considered a “long time” between them? Weeks, months, years?</div>
    • <div>Is MG a cumulative disorder? In other words, does it cause a steady, inevitable decline is one’s condition like Alzheimer’s or Lou Gehrig’s?</div>
    • <div>My first episode made itself known when it caused me double vision. Can MG stay limited to affecting vision, or is it likely to spread to other parts of my body – walking, breathing, muscle strength?</div>
    • <div>Is there any anecdotal information that improvements in lifestyle can help control the spread/severity of the disease? I have seen  posts of people making wholesale changes in their lifestyle, but no long term follow up.</div>
    • <div>I felt like I had no notice at all of my first symptoms. All of a sudden, I was seeing double. Will I develop a sense that it is coming on so I can get the Pyrid Bromine going to stave it off?</div>
    • I’d appreciate any insight anyone might have to share.

      Thanks in advance.

  • #18542
    Amy Cessina
    Participant

    Mine started in my eyes. Never had DV just blurry and ptosis. I am over 4 years out and am still considered mild. So it doesn’t necessarily get much worse but often does. I did overhaul my lifestyle and  strictly stick to it. Exercise and nutrition for me is very important as is sleep and stress reduction. Also it’s not a degenerative disease so it doesn’t cause destruction of your muscles. I visit the doctor for every issue and keep up with all routine exams so I stay in good health. I see my neurologist every 6 months.

    • #18639
      Stanley Schildkraut
      Participant

      Dear Chris, I must add this to my reply.

      I was told this morning my MG is here to stay. This after my years of hearing this. It threw my into a loop.

      My wife says I knew this, yet it was like being hit by George Foreman.   Be well and take note from  an old timer, smile as often as you can, Stanley Schildkraut

       

       

  • #18557
    Robert B.
    Participant

    I’m also 65 and was diagnosed with gMG (generalized) 8 years ago. I’m on IVIG infusions, which have kept me stable.

    Your neurologist can test you to see what kind of MG you have (there are several). If you have Ocular MG, it will probably only effect your eyes.

    Getting plenty of sleep and resting during the day when I feel fatigued helps greatly.

    Best of luck to you!

  • #18558
    Craig
    Participant

    Myasthenia is considered to be an incurable, progressive (but highly variable) condition.  One of the often quoted lines is “most people live mostly normal lives”, which sounds great but covers everything from “take your mestinon and go about your life as normal” to “you were able to shower and dress yourself today like most people, even if you had to rest after that”.   It’s incredibly variable but with modern treatments like immunosuppressants and mestinon/pyridostigmine most people do really well.   There is some identified time period – I think 2 years – where if it stays only affecting your vision it is extremely likely to stay just there and not progress to generalized MG.

    I have seen the same or similar comments about disease severity that you mention, that the first two or first 5 years are the worst.  I think there are two parts to this – my own experience was like yours, started with double vision but I very quickly ended up in the emergency room with trouble swallowing and a whole bunch of other issues.  Some people progress very quickly at the beginning and many of the treatments take some time to take effect. The second part of that first couple years is the mental adjustment to new limitations – “I can’t drive today, the double vision is really bad.  I’ll try tomorrow”.

    The time between flare ups – and even what you consider a flare up – is very different and I think hard to predict.  Some people are very affected by stress, some people may have flare ups if they catch a cold or get sick, some people just seem to get them from time to time with no clear root cause.  You may be able to push down a flare up by increasing your mestinon or your doctor may change up your immunosuppressants.  Unfortunately there isn’t one clear answer, that’s something you’ll figure out in partnership with your neurologist or doctor over time.

    A lot of people do benefit from changes in lifestyle.  Many of the doctors seem to recommend Mediterranean-type diets and they all encourage regular exercise and stress management.

    I think you’ll develop a sense over time that it’s time to hop on the mestinon or take a little extra. My first experience with MG-related double-vision was at highway speeds at rush hour coming into the sun after going under an overpass so I didn’t have any warning of my first experience either.  A couple years into it, I have a pretty good idea if I missed a dose or if I should be thinking about taking some more now.  I’d say watch for blurriness first – that’s likely to be right on the edge of where you brain can keep a single focused image.  As time passes or if you put your eyes under strain (in and out of the light, extended reading, etc), that’s the point where I start to push into double vision.   Also, once your MG is controlled if you still have double vision then there are things your opthamologist can do with prisms in your glasses to correct it.  You’re very lucky to have an eye doctor who knows about MG, hang on to them!

    If they do find they need to take out your thymus, some people experience essentially full remission once that’s taken out.  It can take up to a year once it’s taken out, and it’s not guaranteed (it didn’t help me) but as I remember it, if it has to be done, it has the best impact in cases like yours where it’s early and mild.

    Best of luck with your doctor visits!

    • This reply was modified 3 months, 3 weeks ago by Craig.
    • This reply was modified 3 months, 3 weeks ago by Craig.
  • #18563
    John W Carnahan
    Participant

    I don’t know if my comments will be of any help, but I am 79 years old, and have had ocular mysthenia since 1973, My first symptom was also double vision, but I had no luck having myasthenia diagnosed until the following year. The double vision lasted throughout the first year, but it was ptosis that sent me in search of answers. Since that first diagnosis I have been on Prednisone in various dosages for more than 47 years, until four years age when Mycophenylate was added. Medication has been successful in keeping the worst of the symptoms in check, but I have had numerous exacerbation’s over the 47 years. I don’t recall any warning signs that a change was going to occur. In fact, seemingly random occurrence of symptoms, or worse symptoms, has been the predominant course for my MG.

    One of you questions concerned the cumulative nature of MG. I can’t speak for others, but my MG has never shown anywhere but my eyes, which I suppose makes me one of the lucky ones.

    Your question about lifestyle changes and the possibility that they may improve the MG, once again I can only speak of my own experience.  When I contracted MG I was drinking more beer per day than was probably good for me, but I continued that pattern until about 1990 when I switched to wine, which I then drank daily up until  last year, when I suddenly lost my sense of taste and sense of smell. The literature says that loss usually goes away, but so far it hasn’t.  What I have seen in my own case and in a number of others is that MG seems to be a very individual disease. It seems to come at people differently, responds differently to whatever medication you are taking, and defies any notion of predictability. Having said that, little of what I said will be of use to you, since you may not react to medications as I did, nor will anyone else’s experience be of much use to you.

    But I must say that for all the forty seven years of my MG I have led a good life and tried to respond as knowledgeably as I could to each twist and turn the MG threw me. Best regards, John Carnahan

  • #18564
    Douglas F Young
    Participant

    Christer, I was diagnosed at 67 with diplopia and tsosis.  That was the extent of my symptoms for about 4 years.  Some people never go beyond these ocular symptoms. However most people do. The extent to which they get generalized symptoms varies highly.

    Something I have noticed in my research and interchange with with other myasthenia patients is that this is a highly individualized disease. I encourage you to read all of the forum topics and contributions. You will get some insight into how unique each person’s experience is.

    Nonetheless,  I feel comfortable telling you some things I have learned.

    MG is not predictable. Is has its ups and downs. You will eventually find your own range. I for one am almost asymptomatic as long as I take my meds, in my case mestinon (pyridostigmine) cellcept, small dose prednisone and biweekly Soliris. Don’t worry about anticipating spells medically; mestinon works almost immediately and is the only thing that directly addresses symptoms. You should do some research on the role of acetylcholine in MG and how the enemy is the autoimmune antibodies that attack the acetylcholine receptors in the nerve synapses.

    You were extremely lucky to have so quickly encountered someone who recognized your symptoms. Accounts abound of diagnoses delayed months, even years by consecutive medical professionals with no familiarity with the disease.

    Depending on the course of your disease, you may be advised to take immunosuppressants, to inhibit the rogue antibodies in your blood. Steroids act quickly but with significant side effects that make a less desirable long term solution. Imuran and cellcept are common additives or alternatives, but are long arc tools, often taking months to kick in. I have not found mestinon to be very helpful for ocular symptoms, every one is different. You might never need anything else. But my reading has led me to believe that less than a quarter of patients stay at the ocular stage.

    Don’t work or exercise until you are exhausted. Know your limits. There is no value in wearing yourself out. Myasthenia is not so much about weakness as it is about fatigue.

    Find a neurologist with experience with myasthenia who has an open mind.

    Try to avoid stress.  Good luck with that.

    Good sleep and timely rest are good medicine.

    There’s a lot of good information here, and a collective centuries of experience.

    See you around!

    Doug

  • #18565
    Christer Whitworth
    Participant

    I want to thank everyone here who has replied to my post. My ophthalmologist who happens to specialize in MG has told me he thinks it will stay with my vision. I hope he is right! I was prescribed Pyridostigmine Bromide and another pill to counteract any gastro issues that may arise. So far, I have not had a second incident of double vision and am hoping for the best.

    Thanks again for so many of you taking a lot your time to reach out.

    Chris

  • #18570
    David Davidson
    Participant

    I started having jaw weakness  first then the double vision in august 2013 and was diagnosed with Gmg in December 2013 .  Things got a lot worse from there. I was 63 when I was diagnosed. I have glasses with prisms that really help the double vision. 2 Ivig infusions  a month and 2 Soliris infusions a month, 180 mg SR mestinon, 2mg prednisone a day. Hope this helps. I pray that you only have ocular mg. Good luck.

  • #18573
    Sally W Hardter
    Participant

    I was diagnosed with MG in 2013 at 59 but had symptoms since 2011. Double vision and Ptosis the main symptoms as well as fatigue and, like you, I was lucky to have a great ophthalmologist who ordered blood work confirming his suspicions and a diagnosis. I had a thymectomy in 2013 because of a thymoma and was in remission for about a year but DV and drooping came back. I have used Mestinon and Cellcept since that time and have had ups and downs but nothing serious. There are LOTS of medication options now and most have been helpful as well as a new medication that hit the market. I have been semi retired since 2019 and found, unfortunately, that drinking exacerbates my symptoms sometimes. I enjoyed a wine or beer but if I overdo it shows. Good luck and the web sites are enormously helpful with information 🙂

  • #18587
    Amy Cessina
    Participant

    After reading this post. I have to admit how surprised I am to see the number of medications people take. I am curious why up to three immunosuppressants are needed. Is that for just ocular symptoms? I really am interested since I have not taken these yet and I’d like to have information in case I need it. I know no others with MG besides people here so it would be helpful to me. Plus hearing your stories also has been helpful. I am only 4 years out but neurologist says it can come on anytime. Thanks

    • #18628
      Craig
      Participant

      Amy, I think it often goes like this with the multiple medications:  patients are started on prednisone because it’s fast, effective, and inexpensive.  But over time and/or at high doses it can cause a lot of other problems, like bone density loss, glaucoma, high blood pressure, and the bane of my existence, increased appetite. People on long term prednisone might be prescribed calcium and vitamin D supplements to try to offset some of the effects of the prednisone, or bactrim to prevent lung infections like mentioned in another post in this thread.

      To try to reduce the predisone dose, they add “steroid sparing drugs” – immunosuppressants that work well with prednisone to produce the same effect but at lower prednisone doses.  This is where cellcept (mycophenolate), azathioprine, or methotrexate get added in to the mix.  Taking the two together lets them use less prednisone for the same result.

      If the oral medications aren’t enough, a patient might be put on IV immunosupressants like Soliris or Rituxan, or on IVIG which isn’t a suppressant but something that kind of modifies the behavior of the immune system for a few weeks at a time.

      I don’t know how far along that spectrum it usually takes to keep just ocular MG under control. I suspect it’s pretty variable but my guess is it’s more likely to be controlled with just the pills compared to generalized MG.  But that’s just a guess.

  • #18588
    Kent Moore
    Participant

    Chris,

    First off, it sounds like you have a wonderful ophthalmologist. That was a good catch.

    My particular issues with MG haven’t been ocular, but I have a close friend who does.  When she has flair-ups, her neurologist tends to put her on a moderate prednisone protocol which tapers off after a couple weeks.  That and tweaking the Mestinon for awhile seems to really help her.

    Interestingly, a similar approach has worked for me — and I have what I guess is called generalized MG.  While RV camping a couple summers ago at 7200 elevation, I began to experience extreme muscle fatigue and mildly labored breathing, especially when I lay down to sleep (weird). We got off the mountain the next day and things got a bit better.  I also went and had any heart issues ruled out.

    I had experienced that same kind of muscle weakness before from the MG, but not the breathing issues. When the heart and blood tests came back showing no issues, my neurologist put me on a 3 week protocol of prednisone.  The results were almost immediate.  I’m now on 1 10mg pill of prednisone per day, along with 2 Mestinon every 4-5 hours, and I’ve been doing pretty well. We even took the same trip this past summer and there were no issues.

    It will be interesting to see what the summer brings for you (I don’t know if you live in a hot climate). Some find that their MG does tend to flare up in the heat of the day.  Just be aware that you may need to pace yourself.

    Best of luck to you —

  • #18589
    FrancisW
    Participant

    I am male 62 years old diagnosed 1 year ago. I could not keep my right eye open or keep my head upright. Sometimes having labored breathing. One alcohol wine drink would make it impossible to talk and difficult to swallow. Found a good Dr. I was put on Imuran and Mestinon. 4 times per day each. I have non-thymus MG. Nevertheless the recommendation was to have surgery to remove my thymus. I did not. In the Orphanet Journal of Rare Diseases (2021) there is credible new research (I believe) that states that late onset non-thymus MG (NTMG) thymectomy yields no benefit versus conservative treatments. My Dr. and the surgeon was not aware of this research. I can send you the article. There are significant videos on use of Vitamin D to treat autoimmune diseases. So I started taking 15,000 IU per day. And I monitor my blood with tests. I brought my Vitamin D up to 150 ng. My Dr. suggested staying at 10,000 IU per day. There is also research that suggests the stomach plays a part in MG and the inflammatory cytokines may start in an stomach imbalance . So I added Ginger Root and Turmeric supplements. With Turmeric it was the Curcuminoids I was after. Turmeric 900 MG 4 times per day with 95% Curcuminoids. Turmeric I take to lower body inflammation. Ginger Root 550 MG 4 times daily. Ginger Root I take to improve my dygestion.

    Presently, I only take 3 times daily Imuran (50 MG each) and 2 times daily Mestinon (60 MG each). I just had dinner with my wife. Had a glass of wine and a cocktail. I was able to eat and talk thru the whole meal. I expect to reduce the Mestinon to 1 times daily soon, or as my Dr. says only as needed.

    There is hope ! If I can help let me know.

  • #18590
    David S
    Participant

    Howdy –

    – Is MG a cumulative disorder?

    I guess that I am considered “Stable” after 2+ years of treatment.  I have gMG that started with Double Vision (DV) and was first realized while my wife and I were driving our 42′ Diesel Pusher up route 17 North out of Tucson to Cottonwood.

    After 2 ER visits and 2 incorrect diagnoses, I saw an Ophthalmologist that first uttered Myasthenia Gravis.  Four months later gMG was Officially diagnosed after tests.  My Neuro said I should be grateful that I do not have ALS.

    Now I take Mestinon/Pyridostigmine, Imuran, Prednisdone and monthly IVIGs.

    I always have some DV.  Most times I have come to live with it.  For two years I did not drive but got my license back a few months ago.

    The biggest challenge I face, almost daily, is not what I can do but rather, what I can not do.  Today my oldest Grandson wanted to get me an airplane diorama, but was advised by my Wife and Daughter that due to my DV and loss of fine muscle control in my hands, that it probably would not be a great idea.

    My latest idea, to save water, was to install a Drip Irrigation system in our flowering shrub gardens.  I have used Drip Irrigation for many years and have always been able to do the job myself.  Today due to loss of muscle strength, I was able to complete in one day what it used to take me in one or two hours.  Very frequent rests.  Sweating, heart pounding, breathing heavily and fatigue would cause me to sit for 10 mins or so then back to it.  From there I started to get frustrated and stressed.  I decided that I should put everything away and do some more tomorrow.

    So I don’t know if I am “Stable” or not.  I do know, if I over work or get over stressed my symptoms get worse.  My warning signs are tremors and speech issues.

    Our life has changed dramatically.  We are adjusting to life with MG.

    – Is there any anecdotal information that improvements in lifestyle can help control the spread/severity of the disease?  There are those that make great lifestyle changes in terms of diet that probably does help.  Others use some type of EMS to stimulate their muscles.  We went from a low carb. low sugar to almost Vegan and so no noticeable change.  So now we try to not eat carbs and sugar and eat lots of fruits and veggies.

    I have been sober for almost 20 years so I have no idea how alcohol might effect me.  A bit of THC does help to “Brighten”

    The last time I got severe double DV I increased my Prednisone from 10mg/day to 20.  Called my Neuro and he suggested I stay there for 2 weeks then taper back down to 10.

    Many can feel the effects of Mestinon after they take it for me, I can not.  I would like to stop it for a while and see what happens but my Neuro says no.

    Guess I’ve rambled on long enough.

    Good luck –

    Scott

  • #18592
    Mike
    Participant

    Hi, Chris. I’m 68 y/o. My MG first manifested two years ago with diplopia. Took a while (approx 1 year) for neurologist to reach MG diagnosis. No treatment or meds given. My second event was last year with diplopia, ptosis, and swallowing, chewing, and tongue issues. 60mg Mestinon was prescribed, followed later by 180mg extended-release. A few months ago I had my third episode and was put on 10mg prednisone. One month ago I was put on a 1-month regimen of 20mg prednisone and Bactrim. Now all my symptoms are in remission and I feel good, especially my stamina. I know I’ll have subsequent events (I’m a realist) and it looks right now like low-dose prednisone will be my symptom-reliever going forward. I realize now that “Myasthenia Gravis” is more of a catch-phrase for many different anomalies that affect acetylcholine receptors, as evidenced by the wide variations in synptoms and their intensities. (But what do I know…)
    Mike

    • #18593
      Amy Cessina
      Participant
      • Hello Mike, would you mind telling me what the Bactrim is used for and if that is long term? I hadn’t heard that treatment before. thank you.
      • #18608
        Craig
        Participant

        Amy, in my case my neurologist prescribed Bactrim (as I remember it) to prevent lung infections while my immune suppression (prednisone and cellcept) is above some level.  I think she said when those taper down she’ll stop that.

      • #18657
        Mike
        Participant

        My Neurologist said when the prednisone dose is at 20mg or higher each day, the hit on the immune system’s functions can be partially mitigated with antibiotics.  I don’t know yet why Bactrim in particular is prescribed (in my case, at least).

        I just completed a 20mg daily prednisone regimen (for 4 weeks due to my recent MG episode) which included Bactrim.  The Bactrim was stopped last week when my daily prednisone was changed from 20 to a daily average of 15 mg, so I therefore assumed that 20 mg was the minimum level for taking Bactrim.  I will have to take 15 mg for 4 weeks before getting dropped t0 10 mg for however long is necessary.  I’ve responded really well to prednisone (all MG symptoms currently in remission!) but know that it will eventually take a toll on my body, so I hope I can come off completely (until my next major episode, of course).  Good luck!

  • #18626
    Thomas Lee Clark
    Participant

    Craig in my opinion and knowledge has a good handle on the MG life. All I have are opinions so I will tell you that this is a great place to connect. No cure but my thymo worked like a light switch. Glad you had an eye-guy that recognized asap. and a good neuro is wonderful.  Stay connected with this MG group. Most all are more knowledge since I was first diagnosed not much in fancy drugs early on for me. Try a patch over your eye and get used to letting your brain figure it out. Another worked for me scene.

  • #18635
    Ronald E. Clever
    Participant

    I am 61, weigh approximately 425lbs.  I started out with double vision about 10 years ago and it came on sporadically so I never thought much about it.  Then in 2017 it came back and would not leave.  My opt neurologist diagnosed me with MG and sent me to my neurologist,  Since then I have deteriorated.  I have a difficult time taking a shower as I get to damn tired.  I now walk with a cane since my legs have gotten so weak that I* fall often.  The cane gives me more balance.  I am leaving work as of June 1st on disability.  I have trouble breathing and swallowing but not all the time.  I still work presently but it is very difficult and June 1st cannot get here quick enough.  I am hoping once I am out of work that I can concentrate on my health and get much better but who know.  It has been a progressive disease for me.

  • #18637
    Kenneth Berg
    Participant

    I’m 6 years in and under control with 2.5 mg prednisone, CellCept and Pyridostigmine.  One thing I must caution you about, your drinking.  I thought I was doing OK as a moderate to light drinker. Then one day, before a cruise, having a couple of margaritas to celebrate, I started losing mobility. by the day of the cruise, I was in a wheelchair. I didn’t realize it was the drinking.  On the cruise I couldn’t even swallow my medication. I was a real mess.  Then it hit me – when I first learned of my MG, the doctor told me drinking, if any should be light.  I immediately stopped drinking on the cruise (although I never had a drink, maybe 1 or 2,  other than taking sips of my wife’s). By the end of the cruise, I could swallow, walk OK and used the wheelchair very little.

    You’re new to MG, my interaction with alcohol may be different than others, but I felt I should warn you.  No sense ending up in a hospital for something you CAN control.  Good luck.

     

  • #18638
    Christer Whitworth
    Participant

    <div class=”gmail_default”>Kenneth,</div>
    <div class=”gmail_default”></div>
    <div class=”gmail_default”>Thanks for your input and heads up on drinking. I can use an excuse to cut back and this seems a good one!</div>
    <div></div>
    <div class=”gmail_default”>This has been a surreal experience. I had this 2-3 day episode with double vision six weeks ago, and then nothing. Not disappointed obviously, but the whole thing seems very abstract. My doctor told me that the episodes come and go out of nowhere. As long as it just affects my vision, I hope it becomes something that isn’t debilitating. I wish you all the best.</div>
    <div class=”gmail_default”></div>
    <div class=”gmail_default”>Chris</div>

  • #18644
    Brad Herndon
    Participant

    Hi All,

    I am 60 years old and very recently diagnosed with MG, and am currently taking Pyridostigmine Bromide 270mg per day  and prednisone 10mg per day.   I am also currently scheduled for my first appt. with a 2nd neurologist, as I quickly realized that the neurologist I was referred to has not really been a leader in this process.  Each time there has been an adjustment in medication or reports of ineffectiveness of treatment, I have had to reach out to his office.  There has been no other live interface since my initial appt. He won’t answer my questions I submit through the office portal.  I just get a phone call from his assistant telling me to adjust the meds.  No instructions to check in, report results, etc.   This approach won’t work for me.  To one day go from a pretty healthy 60 year old on no medications to being diagnosed with an incurable autoimmune disease…this hands off approach with a physician is not going to work for me.  Not looking for constant hand holding, but a little more back and forth is not too much to ask.

    I am less than 30 days out since diagnosis, and am actually seeing some improvement in symptoms.  But I suspect this was not the beginning of my journey.  Christer, I wish I would have had an ophthalmologist as intuitive as yours because I think my MG was missed as far back as 2019.

    I started noticing some very minor “ghosting” or very slight double vision intermittently in Fall of 2019.  I didn’t think much of it, since it came and went.  I chalked it up to eye strain, tiredness, etc.  In December of that year, I went to see my optometrist for my annual checkup and renewal on contact lense  script.  She was not able to correct the misalignment within tolerances for my left eye.  My appt. happened to be during one of the “ghosting” periods, but I guess it was worse than I thought.  She referred me to an eye surgeon, as she thought that I was suffering from Adult Strabismus.

    I saw the eye surgeon in January of 2020.  He recommended surgery to correct the misalignment. My diagnosis was “Idiopathic Adult Strabismus”.   The first surgery was in February.  The doubling stopped for a few months, but then returned.  On a follow up visit to the surgeon, he recommended a correction for the right eye.  This was performed in June of 2020.  After the 2nd surgery, I did not experience an doubling for over a year until fall of 2021.  Again, it was intermittent.  I went back in to see the surgeon and he recommended that I do some computer based eye exercises.  This seemed to provide some improvement, but was not consistent.

    Then, with the onset of the 2021 holiday season, things started to change.  This was the first time I noticed that my right eyelid was drooping.  It was very slight, intermittent, so again, I chalked it up to being tired, etc.  Then,  a few weeks before Christmas, the ptosis became constant and the double vision got much worse.  It was also during this time that I noticed in the mirror one morning that my face didn’t look right.  The right side of my face was sagging and the corner of my mouth on the right was lower than the left.  This definitely got my attention, because now I was thinking either a mild stroke or Bell’s Palsy or something was going on.

    This post is becoming really long…sorry.  Since January of this year, I have seen my PCP, a neurologist, had a head CT, chest CT, MRI, MRA, bloodwork, which showed really high AchR numbers, confirming the MG.  Scans have been clear, no thymoma, for which I am very grateful.  Most of this ordered by the neurologist, which I am grateful for, but to echo what most everyone here is saying, this isn’t a , “just take this and I will see you in a couple of months” type of disease.  Thus, the upcoming new patient appt. with another neurologist to try to partner with.

    I can’t help but think this all began, albeit, very gradually, back in 2019.  I wasn’t showing any other symptoms other than the double vision, so clinically, I guess I didn’t present as an MG patient.  But somewhere during this eye surgery process, I wish the doctor would have ordered a AchR test.  His website even shows that he has MG patients and performs Strabismus surgeries to help with the Diplopia.  It seems to me at 58 years old, and you suddenly develop double vision, idiopathic should not be the goto unless your doctor does some testing for possible reasons to rule out other causes.

    Now I have concerns that because the anatomy of the muscle structure of both eyes is different due to the surgeries, is that going to complicate the resolution or improvement of the Diplopia?  I am hopeful but, again, it is still very, very early in the process.

    Also immersed in research for diet and exercise changes, possible supplements to add and anything else I can find.

    Thanks for reading.  I am grateful to have found such a great resource and is a comfort to know there are others who can understand the experience.

  • #18659
    Susan
    Participant

    Husband was diagnosed with BP after first incident at 60. Nine month’s later had a second. First two years we tried high prednisone doses, Mestinon, Cellcept, IvIG. After three years it generalized and we found a Neuro at Southwestern in Dallas. Now 3 years into a drug trial for Zylucoplan and in pharmacological remission. Zylocoplan is supposed to hit the market in ‘23.

    I am a research nut. There are several new drug trials that are showing great promise. Keep up with the trials and if your MG generalizes or even if the ocular MG get to a point where it really effects your daily living, find a research hospital doing MG trials.

    Autoimmune Diet, exercise, avoiding extreme heat or cold, staying at a healthy weight all make a huge difference. We don’t adhere 100% to autoimmune diet unless MG gets out of hand. Sugar seems to be the real enemy for him. Moderate alcohol hasn’t been an issue if other sugar is avoided.

    Stay on top of the developing med research. Best of luck!

  • #18705
    paul spychalski
    Participant

    I just got glasses with prism’s and IT REALLY helps with the double vision. Go yo a highly recomended eye doctor for them.

  • #18706
    paul spychalski
    Participant

    Stumble and fall, double vision. Get glasses with prisms when you need yhem.

  • #18767
    Barbara E.
    Participant

    The first thing to remember is that MG is called the “Snowflake Disease” because it varies in each of us.

    Be careful about taking more Mestinon (Pyridostigmine) than prescribed because the trick is to hit just enough to help with your symptoms – the medication sweet spot. Too much pyridostigmine can be just as bad as too little –by actually increasing symptoms! Over time, most likely your medication will need to be increased, and even possibly decreased or even discontinued (like mine during a remission that lasted almost 10 years before returning). Eventually, you will learn more about how you respond to your medication. But it’s best to first talk to your doctor about what to do when you have a flare up. Don’t just sit back, push your doctor to find the answers that you need.

     

    In my 40s, my ocular MG first appeared as ptosis, which was quickly diagnosed because my ENT referred me to a neurologist. In the beginning only a relatively small amount of Mestinon (Pyridostigmine) was needed to control my symptoms. Then extreme fatigue started, so Provigil (Modafinil) was added. Plus, during flare ups (usually after an infection), Prednisone would be added. Over time, the dosages all of these medications increased. Through all of this, I was fortunate that my husband never complained as he carried the weight of the day-to-day home duties and provided me with the love and support that I needed.

    Over the years, my classification changed to generalized MG. By this time, my symptoms increased and expanded beyond just my eyes to include muscle weakness of my arms/legs and eventually breathing. Eventually, I was hospitalized due to total paralysis during a myasthenic crisis. During my15-day stay, I was given massive amounts of IV steroids to suppress my immune system followed by a multi-day IVIg treatment. This returned me to a functional level, so I could return home. After the improvement only lasted a few months, I followed my doctor’s advice to retire (disability) and focus on reducing stress and taking care of myself. Within the next year, I was shocked to be told that I was in remission and no longer needed any MG medication! My remission allowed my husband and me to travel and for me to enjoy many activities, hobbies and even dance again. And when my husband’s health declined, it gave me the ability to take care of him during his last years.

    Now, that my MG symptoms returned last year, I find that the symptom that bothers me the most is the extreme fatigue. The drooping eyelids (ptosis) quickly expanded to arm/leg muscle weakness. I find that it’s much more difficult adjusting to having MG again – especially being on my own. But I’m determined to deal with my MG and find a way to still enjoy my life.

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