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New life with MG

I’m just starting my journey with MG. I’m scared and concerned. People are beginning to notice that there's something wrong. My eyes are sagging, they drift outwards. I have trouble completing workouts.
My Neuro-ophthalmologist diagnosis me on Friday, July 30. Now I’m waiting for the antibody tests results. Now I’m realizing I might have more symptoms than I thought. Like my fingers shake
Sometimes making it hard to touch my nose normally. I have a couch that my allergy specialist swears is GARD but respond better to Benzonatate than Famotidine. Has anyone one else experienced such concerns?

  1. Hello,
    Glad to be part of this community. I’ve felt alone for many years. It’s good that mestinon works for some of you,however, not so much for me. I’m taking Ruzurgi at the present time. I’m also suffering with dizziness with a heaviness behind my eyes. I’ve seen 4different neurologists thus far, and no one has answers for me. I’ve seen an ENT, ophthalmologist and had cataracts removed which made my vision worse. I’m searching for an MG Specialist in this area or state of SC. Any information would be helpful. Thanks 🙏🏿

    1. Hey! First, have you used to search for doctors in your region? Have you tried any other MG treatments?
      - Jodi, Team Member

  2. Looking for a forum that has more current discussion. I’ve been struggling with mg for several years, bit by bit without realizing I had it. It first I assumed it had to do with my cataracts being the issue. However soon after I had surgery in 2021 for the cataracts I felt my vision was still astray. I complained to the ophthalmologist, but basically blew me off. Had more sympathy from the assistant, however he did ask me if I had crossed eye issue as a kid. I said no. Sent me to another eye specialist, who did small eye muscle incisions to see if that would help. Within the next 6 weeks mg fully manifested itself. I more or less diagnosed it myself and a blood worked confirmed it. I was doing ok with medication prescribed by neurologist until September 30th. My neurologist had changed my medication several weeks back. Like a light switch my vision has gone askew. We’ve added A third medication put the progression is going slow.

    1. Hi my apologies for your experiences. My symptoms didn't first appear until after my first next fusion and reverse kyphosis repair. I awoke from the surgery with severe generalized muscular weakness and new alergies including to adhesive. Over the years new symptoms arose but it wasn't until awakening with severe ptosis about 6 years later that I was diagnosed. Even with that progression has changed quite a bit for me over recent years. IT presents differently in so many of us. What we respond best too also differs. That being said, I can completely understand your experience with the ophthalmologist . I had a very negative experience recently and had to walk out of the office (ok wheel out) because he was trying to force tests that were causing me severe pain. Having lost temporary site after a similar experience from a former neurologist, I have learned where to draw the line. Also have learned that any future appointments will be with a specialized ophthalmologist for neurological and muscular conditions. - team member Deborah

    2. Hello, I just wanted to mention that incorrect thyroid dosing caused my already droopy eyelid and double vision to worsen, so just another possible thought. Take care.

  3. Hello from an advocate. My husband had a similar experience. It actually took 4 years for accurate diagnosis and effective treatment. Part was his fault. For the first two years the symptoms were ocular and mild. When the first blood test came back negative, he tried to put it out of his mind (and just shut one eye when the double vision hit.) Then he got really sick, and was totally mis-treated. (Levaquin IV!) Finally at a major and very competent hospital system he had very thorough diagnostics and a real expert--the only one in our state--identified triple negative MG. Now 3 years of consistent medication and IV Ig has really made a different. I'm writing a little diary tonight about his biking! I write this to emphasize that you must be persistent, consistent, and take good care of yourself. You will improve! Juliana ( team)

    1. It's been a really rough month. My allergists had me complete another pulmonary test. I had to try 5 times before we got a reading. The results were odd as always. The numbers were normal but the breathing pattern, which didn't indicate asthma, still was not normal. I had a test for Gerd which was totally normal. I have seen my ENT he says there is a lot of fluid throughout my throat but my vocal cords looked OK, that day. However, I still cough up clear stuff or some sort of mucus on a regular basis. It is difficult to speak, people are beginning to misunderstand what I'm saying, it hurts to speak louder, not that it seems to help anyway. My left eye still floats off when it pleases and refused to stay open one morning. My right eye has develop twitching in the lower lid in addition to all the other wonderful tricks it too does. People are beginning to notice and asking if I'm O.K.

      To make this mystery even stranger my antibodies test are normal or are they...hmmmm
      My AchR= 25 to be borderline I needed to test 26; however my AChR Modulating Abs, serum is <12. The lab noted that a reflex(a redo) should be done, it wasn't.

      On Aug. 24,2021 all the tests I requested have been completed and the rather tedious process of sending new records to my specialist has begun again. The good news is that based upon what we know now. I have been cleared to begin Mestion. I'm Waiting on Walgreens to fill it now. It was called in at noon, it's 3:00P.M.

      1. oh okay

      2. try Good rx, it's cheaper than Walgreens

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