Do You Have Seronegative Myasthenia Gravis? What Treatment Has Improved Your Symptoms Best?
Are you diagnosed with seronegative MG?
Which treatments have you been approved for? Which have you tried?
Which form of treatment offered you the most improvement, and what doses?
- Jodi, Team Member
I’m seronegative, started out with mestinon which worked well for over a year until my weakness started progressing fast. I had a port inserted and started Ivig 3 days every 3 weeks. During that process I was also diagnosed with stiff person syndrome (there are many MG patients in my support group). I am now on rituxan 2 x every 6 months along with Ivig. No more mestinon
Have you seen any improvement since starting the Rituxan? -Jodi, Team Member
My name is Saul Calderon,
I was diagnosed with seropositive myasthenia on 01/18/2023. At the beginning, my neurologist treated with Mestinon 120 MG 3 times daily but didn't help me much, so he added IV VYVGART infusion one each week 4 weeks stop for 5 to 7 weeks to start again IV VYVGART 4 weeks cycle.
IV VYVGART infusion cycle improved my health and reduced MG symptoms by 65 % so far. I am the beginning of my 4 VYVGART cycle. My neurologist said that MG symptoms could decline up to 100% taking in consideration data from other MG patient in studies.
Could someone please tell me what IVI treatment stand for ?
Thank you and best wishes for all MG community for this Christmas 2023.
Hey! How have you been doing lately? Sorry your question got missed, IVIG, if that is what you were asking about, is a procedure in which healthy antibodies pooled from thousands of healthy donors are delivered to the body via an IV,https://myasthenia-gravis.com/plasma-exchange-ivig.
-Jodi, Team Member
Yes I am Seronegative. The Mestinon helps a lot because I can tell if I miss a dose by weakness/heaviness in my arms and legs. Having 3 other autoimmune diseases it’s real hard to pinpoint flares and what the culprit is though. But I also haven’t had the double vision since beginning the mestinon in January of this year. Looking back on things, I have had to have my esophagus stretched twice but always attributed it to either the Lupus or Sjogrens. It could have been the MG all along?
Hey! How have you been doing lately?
Jodi, Team Member
I've recently been diagnosed with generalized seronegative myasthenia Gravis. I tried Mestinon twice but the side effects were too bad to continue. Especially the muscle spasms. I'm on carbamazepine for the spasms now but nothing for the MG. My neurologist wants to try me on IVIG but I'm reluctant. I've heard about terrible side effects including meningitis. It would be helpful to me if I could hear some of the members experiences with IVIG treatment. Thanks for your help!
I envy all of you who received an MG diagnosis. Because of my age, I think my doctor didn't really care if I had any disease or not. I'm 73 now and was only given a name to call my symptoms a couple of years ago. After a 2nd muscle biopsy she finally said I had a myotonic dystrophy. She said my test results didn't show enough for a more specific diagnosis. I read all of your comments and can identify with so many of your symptoms: double vision, can't hold my eyes when I'm tired, fatigue that leaves me so drained that I sit and sleep all day, deteriorating strength, and loss of core muscles so that I lean because I have difficulty standing up straight, difficulty swallowing sometimes and if I talk too much my voice leaves. Oh, and I can't forget the pain. It's wonderful your doctors have tried so many medications. When they discovered Lyrica pretty well controlled my pain, they told me there was nothing more they could do for me and I didn't need to come back. Hey there! Many in this discussion share how they were diagnosed in their 70s and some older: https://myasthenia-gravis.com/forums/how-old-were-you-when-you-were-diagnosed-with-mg. Even though you do not have MG, I greatly hope you still benefit from the advice in our articles, and I'm glad you've come across our community 😀 I highly recommend this article for you, it is about advocating for yourself: https://myasthenia-gravis.com/living/educating-yourself. I understand that it can be frustrating when you feel like you're not receiving the quality care and effort from doctors that you desire and rightfully deserve. I hope just because some doctors tell you that you are fine or there is nothing more that can be done, that you trust yourself and choose yourself, and thus continue to search for doctors and solutions until you are on the upward of healing, even if that is coping and relief. I send good vibes your way!
-Jodi, Team Member
