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    • #19725
      Alice Ulrich
      Participant

      My husband was finally diagnosed with MG in 2017 after several years of trying to figure it out.   He had tried multiple treatments including Plasmapherisis, IViG (had to be stopped because of reactions) then Chemo (had to Be stopped because too sick and liver functions). Now on 3rd treatment of Vyvgart with no change whatsoever.

      Question, he is seronegative and has multiple other diseases.   Anyone else in the same boat? We are completely frustrated.

      thanks very much.

    • #19748
      Mary Campbell
      Participant

      Hi

      I am zero negative diagnosed with a positive single fiber EMG and I have several other diseases. I have rheumatoid arthritis, celiac disease, Reynards phenomenon, and interstitial cystitis. It took me a good amount of time to get diagnosed about 3 years but my MG started in my eye muscles and it was not until the disease progressed from vision issues to droopy eyes and face that I was diagnosed. I ended up figuring it out myself by way of looking for other autoimmune diseases that could fit my symptoms and then had the tests to prove the diagnosis. Most of the doctors I went to even though they knew I had several other autoimmune diseases did not think I had MG because my blood work came back negative. As soon as I was given Mestinon I had huge symptom relief and then about a year after my thymectomy I was about 60% better and able to reduce my prednisone from 20mg down to 5mg. I have been on 5mg ever since about 5 years now and I still have to take Mestinon every 4 hours but with this my life is very managed and I am able to work and do small amounts of exercise. Keep going until he gets diagnosed and a thymectomy it was huge for managing my symptoms on less prednisone. Good luck to you!

       

      • #19784
        paul spychalski
        Participant

        Does anything get rid of MG, Double Vision, nasal voice (at times) ???

    • #19749
      Amy
      Participant

      Hi Alice, my situation is similar to Mary’s. I have multiple autoimmune diseases, Sjogrens, Hashimoto’s, Raynauds, gluten intolerance (probably celiacs). I have been gluten free for many years so it is hard to tell now without a colon biopsy. I also am seronegative and have a positive SFEMG test. My double vision and droopy eyelids were the first to appear. I also have cancer and neuropathy. If your husband hasn’t been put on Mestinon that should be tried. I take it every 4 hours around the clock. If I miss a dose or am late my legs become so weak that I have trouble lifting them and tend to shuffle and have fallen a number of times. I have no trouble telling when it is time to take my mestinon dose. It even effects my breathing at night. Good luck. Amy

    • #19757
      Carol
      Participant

      I was originally diagnosed with mg with a blood test processed by the mayo clinic.  I was put on mestenon but it gave me severe stomach cramps and was taken off it after 5 days.  Had muscle tests and muscle biopsy all negative.  Repeated blood test at local hospital and it came back negative.  My doctor said she could not do anything for me. My family doctor said it was fibromyalgia.  Went on 2 types of meds for that for 5 weeks with no change in symptoms.  Had mucke tiredness so bad i had trouble funtioning at times.  Pain all over my body to the point i couldnt take it any longer.  I happened upon prednisone in my meds and they helped when i first started with the muscle tiredness and minor pain so i thought what do i have to lose.  Took 20 mgs a day.  10 in the morning and 10 at nite and i felt much better. Still some pain but tolerable. Muscle tiredness keeps getting worse but i can function.  Weaned down to 10 mgs a day and pain is still ok.  I think i have seronegative mg.  My question is this.  I live in Pa.  I am thinking about going out to the Mayo clinic to see if they can tell me what i really have.  Has anyone gone there for evaluation and what did u think of the clinic.

      • #19760
        Amy
        Participant

        Hey Carol, i see this thread is running twice. I got an appointment with the neuro-team at Mayo in Rochester in Early Sept. They know I am seronegative/Sfemg+ and thank the Lord Mestinon actually works for me with no side effects. Unfortunately I am taking it every 4 hours 24 hours a day. I just recently was given a 180 mg ER Pyridostigmine (Mestinon) to cover me through the night so I am not getting up at midnight and 4 am. Another fly, I have spots on my left lung that need to be biopsied. My first bout with cancer is how I figured out steroids and strong chemo drugs help with my neuro-muscular symptons. The would give me a bump of steroids everytime I had chemo.The steroid helped with the fatigue and inflammation and the Adriamycin/Cytoxan coctail surpressed antibodies. I am guessing why the steroid is helping somewhat is that you have less inflammation and more energy, but are not on anything to supress your immune system, so your symptons are getting worse. Amy

        • #19774
          paul spychalski
          Participant

          What symptoms does Mestinon fix? Thanks.

        • #19776
          Amy
          Participant

          Paul, Immediately, after atarting Mestinon I could actually pick up my legs, prior to that I was shuffling my feet and had to use my arms to lift my legs to get into the car. I didnt notice my eyes right away because I have been wearing prisms to correct the double vision for 5 years. Unfortunately my eyes still fluctuate. My body tells me when it is time to take my next dose of Mestinon. I have the tell-tale signs of weakness in both biceps and upper thighs.

    • #19758
      Carol
      Participant

      I was originally diagnosed with mg with a blood test processed by the mayo clinic.  I was put on mestenon but it gave me severe stomach cramps and was taken off it after 5 days.  Had muscle tests and muscle biopsy all negative.  Repeated blood test at local hospital and it came back negative.  My doctor said she could not do anything for me. My family doctor said it was fibromyalgia.  Went on 2 types of meds for that for 5 weeks with no change in symptoms.  Had mucke tiredness so bad i had trouble funtioning at times.  Pain all over my body to the point i couldnt take it any longer.  I happened upon prednisone in my meds and they helped when i first started with the muscle tiredness and minor pain so i thought what do i have to lose.  Took 20 mgs a day.  10 in the morning and 10 at nite and i felt much better. Still some pain but tolerable. Muscle tiredness keeps getting worse but i can function.  Weaned down to 10 mgs a day and pain is still ok.  I think i have seronegative mg.  My question is this.  I live in Pa.  I am thinking about going out to the Mayo clinic to see if they can tell me what i really have.  Has anyone gone there for evaluation and what did u think of the clinic.

    • #19764
      Susann
      Participant

      I have 11 autoimmune diseases and a primary immune deficiency

      Nothing has helped most of my diseases including Rituxan for 5 years before it was studied in MG or Lupus

      I am also seronegative for MG.

      I have never had any of my autoimmune diseases controlled or in remission

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