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    • #19121
      Jodi Enders
      Keymaster

      It might feel odd to talk about with strangers, but sex with MG comes with its unique accommodations. And who better to understand how you may think than others with MG?

      Do you struggle to communicate with your sexual partner(s) when you need to rest, switch it up, or accommodate the weakness or symptoms?

      Do you struggle with self-esteem issues? Do you ever feel frustrated if you compare yourself to your intimate life before MG?

    • #19130
      Marlene Sue Laird
      Participant

      Ok, I’ll start the conversation.  I have had gMG for around 30 years.  It began with my eyes, then gradually affected all my muscles until I was disabled around 2006 when I saw my neurologist and was diagnosed in 2006.  My husband is disabled and uses a walker.  He is very understanding about my MG when it comes to sex.  We communicate openly about sex and discuss it a lot.  I think that is extremely important to a healthy relationship.  He knows that I can only do so much physically, then I can do no more.  When I feel I am at the point I cannot go on, I either switch up what we’re doing, or if laying down I just relax and go limp. That way I don’t have a crisis in the middle of sex.  It is sad to me that I can no longer do some of the things I used to do, like ‘riding on top’.  My legs just are not strong enough to do that anymore.  So we just do other ways.  I find with MG in general that I have to find different ways to do the things I used to do, or do other things instead.  Yes, it does affect my confidence and self esteem, but I do not dwell on what I cannot do and allow it to make me depressed or upset.  We have a great sex life in spite of our limitations!

    • #19131
      Crystal N.
      Participant

      Hello!
      I guess we with us,  we don’t really talk about it.. I just tell him when I need to switch positions or need him to get off me..

      I personally feel like it’s a self esteem thin on my end to bring up. cause I don’t want to admit that I can’t do the things i use too. Or last a little longer. We just go with the flow..

    • #19135
      Maria
      Participant

      I agree Marlene. I’ve had MG for 30 years. I hate the way it invades every part of my life, but I can’t dwell on it. I try to think about what I can do. I miss the sex life we did have, but we try to make the best of it. My husband jokes that all I have to do is lie there, which is the way it usually ends up. But if we get to have that closeness that’s all that matters. At this point, age would play a part of MG didn’t.
      so glad someone is finally talking about this!

    • #19136
      Jonathan A
      Participant

      I know that sex is a rather unique subject …   for a Myasthenia Gravis website, but I thought that I would put in my two cents, even if it means being “held for moderation”.

      In July 20219, I started showing all the symptoms of MG, starting with OCULAR MYASTHENIA GRAVIS, and then all my other body parts.  I had just turned 68 the previous June.  It took me eight months to be diagnosed with MG, as every doctor who saw me failed.  I was finally diagnosed by a very intelligent and understanding third floor nurse at the second hospital.

      I have been in REMISSION for about 15 months now,  with my remaining problems, being still some leg and calf weakness, along with being really tired in afternoon hours, as well as having ACUTE ONSET INSOMNIA.  So far,  it takes forever to fall asleep, and when you wake up early, it takes hours to get back asleep, if at all.  Doctors still don’t really understand … if it is from the side effects of having MG or the side effects of 2000 MGs daily of CELLCEPT, and 10 other drugs daily.  I have been finally tapered off of PREDNISONE  … my nasty effects from that drug should be out of my body now.

      I have read that MGF of California is funding a study at University of Calif at Irvine on that very topic.  So I am now too old, and no longer have a lady to do it with,   and have not considered sex, in some time.   But with my very bad INSOMNIA, and taking forever to get sleepy and not wake up dead tired and weak, from lack of sleep. I was willing to try ANYTHING to get a good night’s sleep again.  So I don’t know … how many other male MG patients have INSOMNIA sleep problems, especially after five months in five hospitals in 2020 with no privacy,  lights always on, and hallway doors open.  But I was willing to try ANYTHING to sleep,  now that I was at home in my own bed … and I remember reading and experiencing, that sex makes men sleepy,  when you are tossing and turning in bed, from sore shoulder and calf muscles, trying to fall asleep.  So sometimes, when I am totally frustrated  .. but still awake,  I try a hand job.  With a good imagination, and no “wrong colored”  lights keeping you awake, sometimes it works, sometimes not, but sometimes it just makes you fall asleep a little sooner.  I never thought that this topic would appear on this website  … but if it helps one person get asleep sooner and longer, then it is worth it, until someone finds the clue to the MG/Insomnia mystery.

      When you only get 3 or 4 hours a sleep at night, it affects even more what you can accomplish the next day, without constant laying down and resting, or being a half awake zombie, from poor sleep the night before.

    • #19138
      Robert Powers
      Participant

      Just a simple question…does MG cause Erectile disfunction?  All testing has shown no other issues.  Doctors “don’t know, but possibly”…it is a muscle issue.  Anyone else?  Pills don’t work.

      • #19147
        Jonathan A
        Participant

        I started showing all the MG symptoms in July 2019 (I had just turned 68 the month before)  .. and was undiagnosed by every doctor for 8 months.  Now I have been in remission for 15 months.  So far I have not had any issues getting a woodie, once I was back home after five months in five hospitals  … with no privacy or lights ever out.

        But I am Italian, and the eldest of seven kids, and my fraternal grandfather was fresh off the boat from Naples at 16. So that may make a difference.

        As I said earlier  …  my MG or my pill side effects, give me bad onset insomnia all the time  … and sometime a little solo action, makes me more sleepy quicker. It is worth a try.  They say that you can’t get asleep, if you read with lights on, see TV , or do computer work before lying down.  So what else can you do in the dark, when you can’t fall asleep in bed?  When I struggle to get asleep and it takes several hours, all I seem to keep seeing and remembering  …  is all my five plus months of HORRID experiences in five hospitals in 2020, suffering and being UNDIAGNOSED.  So using my imagination in bed at home in the dark, helps me not relive my hospital nightmares, and maybe I can fall asleep sooner, and not be depressed, while trying to fall asleep.

        Maybe what they say is true  … IT’s MIND over MATTER.   Just as I always feel better attending MG support groups ZOOMs.  There are people just like me  …  dealing with MG … and in worse shape than me  …  possibly.  It lifts a burden from your MG life,  knowing that you are not alone.

        • #19168
          Jerry Trapp
          Participant

          I know pills do not work and I have tried tri-mix injections and they do no work very well either. The tri-mix injections are almost impossible to give myself (which is how you have to do it) due to my unstable hands from my MG. I started developing ED late in life (after 76 years of age). I now am very sure that it was actually MG and NOT ED. I was told I had MG (and tested positive) when I was 79 years old. I have both octular and generalized MG. I still have good sex desires and can get a usable erection – usable only with a lot of lubrication. My wife is healthy and only a year younger than I. We have been couple since high school and have had a great sex life for over 62 years. I simply do not have the energy for sex and positions really do not matter much. I am very short of breath continually and about 30 seconds of sex is all I can muster. I have not had an MG crisis, but did end up in the hospital one night for breathing difficulties (no breathing help or oxygen was administered). It was acyually the way I ended up being diagnosed with MG. I now take 15MG prednisone once a day and 60MG Mestinon 3 times a day. I have tried CellCept for 5 months and found no improvement in any symptoms. I did two months of GAMMAGUARD (IVIG) last year and it did not help at all. The good news is I have been accepted into a clinical trial for Cartesian-08 starting Monday for the initial blood draw. I expect infusions to start in about 3 weeks, so I should know if it is going to work soon after that. I had been appproved to start Vyvgart infusions this week, but decided to go with the Cartesian-08 trial instead. So, I guess I have a backup plan if the trial is a failure. Bottom line, is that MG will destroy an mans ability to have any decent sex, if is is severe enough and generalized. I am sure it is my problem even though I am no now an 82 year old male.

    • #19145
      Thomas Lee Clark
      Participant

      We have been in abstention since my last inguinal hernia repair. My wife said I wore everything out! The primary doc said I should not expect very much at 76 years. Now, it all DEPENDS!! I am reluctant to use the word REMISSION. However, since my thymo I have had other work done and None helped my sex putt. We sing an old song from childhood, “Precious Memories, how they linger” At present I am alive and just barely “Kickin”. It is surprising the number of Doc’s who miss MG. I learned of MG by watching a Ben Casey program. Back in the 60’s. I read several of the posts and I must tell all my eyes are fine and  my  mind functions somewhat well. I just say WOW and that is it. It all comes down to a song. “You’ve Got to Accentuate the Positive, Eliminate the Negative and don’t mess with Mr. In-between.” One More Song. Doris Day, Que será, será Whatever will be, will be.

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