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    • #19397
      N Muruga
      Participant

      Recently diagnosed with ocular MG and was told there is no medicine to halt the progress of the disease. Do probiotics help in lessening the severity and symptoms of the disease? If yes, what are those probiotics?

    • #19398
      Brad Herndon
      Participant

      Hi N Muruga,

      That is absolutely not true.  If you have the resources, you need to connect with a Neurologist, preferably, an MG specialist, if possible.  There are multiple treatment approaches.   Some won’t work for everyone but many do.  It is a bit of trial and error, but so important to connect with good clinicians to help guide the journey.

      Best of luck!

      • #19399
        N Muruga
        Participant

        Thank you, Brad.My question was on the basis of an article in microbiology in 2018.It was stated that gut bacteria were less in MG patients and taking certain probiotics may have therapeutic value in the treatment of MG patients.

    • #19407
      Lisa Blutman
      Participant

      Hi:  when diagnosed with occular, my neurologist immediatly put me on mestinon.  I ended up with general layer that is totally undercontrol when adding celcept.  You need to see a good neurologist who will work with you.

    • #19413
      Barbara E.
      Participant

      You mentioned probiotics, which may help depending on your GI issues. Yet keep in mind… There are many treatment options for MG, but no cure yet. Treatmwnts must be customized for each of us because we all respond differently to MG (called the “snowflake disease”) and the treatments. The goal is to lessen and control your symptoms as much as possible and adapt as you may need. With luck, you might even go into remission, which I did for 13 years.

      For the best results, you must work with a great neurologist or neuroimmunologist, who specializes in neuromuscular disorders, like MG. Also, learn as much as you can to help understand and advocate for yourself.

      Start by checking online information available from the Myasthenia Gravis Foundation of America (MGFA), other medical websites (Johns Hopkins, Mayo Clinic, etc.) and even YouTube. Knowledge is power when added to your determination to fight for your best quality of life! Best of luck!!

    • #19415
      Ronald
      Participant

      I have recently started with water Kefir if you don’t know it you can google it

      this is very easy and simply to maintain the production

      i also eat plain natural unsweetened yogurt and I find that this helps to replace and maintain the healthy stomach bacteria which in my case seems to be lessened due to the medication

      my other daily supplements are vit D Ubiquinol 200mg and Astaxanthan

      I am not in remission I do take mestinon 60 mg as required and as fewer times as possible myfortic 500mg twice a day and 5 mg preg

      i play tennis 4 times a week for 4 hours plus and this makes a big improvement to my day

      cold swim every morning including winter and infra saunas at least every week

      I do get IVIG every 4 weeks now being extended to 6 weeks to try to wean me off it

      hope this helps in some small way

      all the best Ron

       

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