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    • #18359
      TheresaG
      Participant

      Amy started a conversation about this a week ago. So far there are 8 of us that have entered this discussion. I’m hoping there are more in this 400 person group.

      We are going to start a Zoom Seronegative MG Group in hopes of self education, advocacy and coming together as a group that needs attention, a Group Voice so to speak. We all have our story and I’m seeing some interesting cross overs.

      If you are interested in joining please PM me your email and we will keep you appraised of a start date.
      hoping to get it organized within the next week or so.

      Looking forward to meeting all of you.

      Together we can be heard and help one another.

      Theresa

       

    • #18372
      Sharon
      Participant

      I have been diagnosed with seronegative mg

      Sharom

      • #18545
        Karen
        Participant

        I have sero-negative gMG and am surviving due to PLEX every other week—I’m really disappointed that the FcRn antibody treatments are only for ACh (+)…. As they are considered “in vivo” PLEX (blocking formation of IgG only instead of removing all antibody types) it should be made available to all patients with MG in whom PLEX shows benefit. While statistical significance was not achieved (likely due to low sample size) a trend of improvement was noted—all the other FcRn antibody drugs in development are excluding seronegative patients from their trials— essentially writing us off…being a rare subgroup within a rare disease drastically reduces our treatment options—this is NOT acceptable. Sorry for the rant PS I had a difficult time establishing an account and waiting to get “verified”—I’m not sure what the totally # of users here is; but at best you can expect ~10% of that # as the max. Based on typical clinical trial enrollment, a more realistic estimate would be around 20% of that 10%— but count me in!—Karen (I do not know how to PM in this platform

    • #18371
      Anonymous
      Inactive

      Good Morning folks, seronegative diagnosis
      a daily occurrence.
      I’ve been around about 12-13years. I’ve been asmisdiagnosed seronegative up until I changed doctors. I was recommended to a young “know it all” neurologist. Everything I said was wrong. He had to be right.
      Our last appointment wasn’t much of anything but it was the end.
      I’m with a doctor who listens, as do I. I’ve been a plasmapheresis patient about 31/2 years. It does work for me.
      I’ve been wrongly diagnosed at least 6 times. Each time I went home, told my wife and started again.
      Let’s keep together

      Thank you Theresa

      • #18379
        Anonymous
        Inactive

        Good morning folks,
        I’m proud to have coined the Tag Will Doctors ever Learn phrase.
        A self advocacy group is a
        great idea.
        The longer we’re living with our myasthenia diagnosis the more we learn how many mistakes our doctors make.
        I’m having a Shiley Port changed this coming Friday.
        It seems the port was being flushed once a month and now has a blockage.
        I’m partially at fault. I let the nurses clean the area around the port while never flushing it. I was too quiet, not saying anything.
        Yes I can definitely use a group.
        I was diagnosed seronegative
        and after verbally approaching my doctor was apologized to.
        With all my time with Myasthenia I do need an advocacy group.
        Thanking You

        • #18399
          TheresaG
          Participant

          Stanley,

          we are a definite misunderstood group.

          always speak up and ask questions.
          be your own advocate and don’t be bullied or intimidated.
          it can so easily happen when we just are trying to be respectful and polite.

          im a bit of a newbie being diagnosed 10/2020. That said, I’ve been around the block in the medical field with a rare cancer as well. So I learned to get all the answers I could and to know as much as I can if not more than the treating doctor. They often are treating multiple diseases and not a specialist in yours. So you have to be.

          See my post I am writing now regarding the forming group.

    • #18424
      Leslie
      Participant

      I appear to be seronegative, although I haven’t been tested for MuSK yet. Neurologist thinks that testing wouldn’t be helpful. Just diagnosed last month.

      Leslie

    • #19365
      Annemarie P
      Participant

      I am seronegative.

      71, diagnosed 1 year ago, not much luck with therapy

    • #19370
      Sheila
      Participant

      I am very interested in joining a Zoom group about seronegative MG.
      How do I PM you?

    • #19386
      Cindy
      Participant

      I’m seronegative too and would love to join. I’m really cotton headed from an exacerbation and/or fibromyalgia. I can’t figure out how to message you.

      thanks,

      cindy

       

    • #19400
      Sharon
      Participant

      I have been diagnosed seronegative am 72
      Would like to join group but do not know how to PM SOMEONE
      Please advise

      Sharon

    • #19401
      TheresaG
      Participant

      I ours like to let everyone who is seronegative know there is a seronegative FB page that is very informative.

      Also please look at MGFA site for info under groups to find there is a seronegative group forming there.

      https://myasthenia.org/Events/mgfa-national-patient-conference-2022

      If anyone wants to reach out to me, you can dm me. If I can help direct you for information.
      Theresa

    • #19406
      Susann
      Participant

      I am seronegative which my neurologist said is the hardest to treat. I am a doctor and did research on my own it is the most severe type and hard to treat I’m on high dose mestinon and IVIG for years. I have failed all immune suppressants including four years of Rituxan off label from 2015-2019. I  stage IVb. I’m on oxygen and have a non invasive ventilator and cannot be in the heat or the sun at all.  They are studying more seronegative pts to try to get approval for Vyvgart for seronegatives

      • #19422
        Willem
        Participant

        My neurologist classified my MG as — Class lla seronegative for Anti-AChR Ab —

        I do not quite understand what this means and do not know my prognosis for the future. I am 77 going 78 and only take 2 x 60mg Mestinon per day, as the side effects on my bowl/bladder with a third tablet is very disruptive. I have my good days and very few bad days at the moment. When my muscles ache on a day I stick it out until the evening, then only I take an anti-inflamatory before going to bed so that I can fall asleep.

    • #19409
      Deb Couraud
      Participant

      I am Seronegative Disease.

      Briefly it took almost 3 years of going from Neurologist to Neurologist after my Thymoma was found and Thymectomy to get a diagnosis.

      I was not believed told nothing wrong go back to work. I was treated for anxiety, depression, etc It was a resident of one of the not so nice Neurologist  that said “I think you have Myasthenia Gravis.” I finally thought I had an answer.

      I finally got an appointment at Texas Medical Center Methodist with a Neurologist and within 5 minutes of talking to him and an exam he said you have Myasthenia Gravis . Its been good just knowing. I had a host of treatments Plasmapheresis, IVIG,  Imuran, Mestinon, Prednisone, Rituxan. I thank God everyday for Methodist and their Neurology department. I have my life back and have learned how to manage my disease and limitations.

      With Rituxan every 6 months , IVIG every 3 weeks , Mestinon, I finally have my Prednisone from 60mg a day down to 10mg every other day. IVIG will be tapered next. My symptoms are minimal with no muscle weakness swallowing difficulty double vision is gone as well. If very  tired or temperate hot have mild ptosis.

      Advocate for yourself, do not accept mediocre care, or a physician who isn’t interested in caring for you. My physician is not just brillant, kind,he’s genuine and an amazing human being.
      I thank God every day for Dr. Nakawah.

       

       

    • #19410
      Barbara E.
      Participant

      After a total remission of gMG (no symptoms nor medication) that lasted for 13 years, my doctor confirmed it’s return in 2021. But, unlike my previous round, it turns out that I’m seronegative!

      So it’s been disappointing to find that none of the newly FDA approved medication is for us! I assume that our rarity might make studies difficult. I hope they don’t continue to overlook us!

    • #19411
      Barbara E.
      Participant

      After a total remission of gMG (no symptoms nor medication) that lasted for 13 years, my doctor confirmed it’s return in 2021. But, unlike my previous round, it turns out that I’m seronegative!

      So it’s been disappointing to find that none of the newly FDA approved medication is for us! I assume that our rarity might make studies difficult. I hope they don’t continue to overlook us!

    • #19416
      Catherine Mahler
      Participant

      Hi, I’m Catherine and would love to be a part of this group. I was diagnosed with MG 5/20, even though I was found to be Seronegative. After a short while , my neurologist had me take a different blood test, the results of which could only be sent to Athena Labs. It showed I was positive for RyR or Ryanodine Receptor, something that no one knows anything about. At present I am on Mestinon and immunotherapy infusions every 28 days (Octagam). This is my second go round with IVIG; the first stopped working for me after 1 1/2 years. My Neurologist recently told me that all treatments out there, including what I’m on, are tailored for Seropositive MG patients and there is nothing specifically for us. It’s not very reassuring to know we aren’t being specifically treated.  Its  a case of try this…. If it doesn’t work we can try this, etc. Is there no one out there that knows something about our form of this disease???!!!

    • #19420
      Taylor Zimmet
      Participant

      Hi, I’m also seronegative. I was diagnosed in January of 2022, so all of this is fairly new to me.

      I hope everyone is doing well today 🙂

    • #19423
      Cyndi DeHoff
      Participant

      Hi Teresa , I want to be a part of the SEronegative zoom group please. You should have my email already. Text me if you need it again. I tried to DM but it said they were temporarily suspended

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