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    • #19384
      Patsy Bobb
      Participant

      Hello, I was diagnosed with Generalized Myasthenia Gravis in 1989. I am now 48 years old. My job as a Librarian is stressful, however I think my time on the computer is stressful for my eyes. It seems the last 3 years. I’ve had double vision once a month, that causes me to  Do Not drive stay home with increased steroids and Mestinon. I am also on Immuran 50mg 2x daily, but my eyes still tend to see double vision. I was hospitalized 2 years ago for IVIG for this reason. Have anyone tried the Vyvgart infusions yet? My neurologist recommended it to me. I suppose to meet with him very soon to see about the possibility of starting me on Vyvgart. I have read up a lot of positive outcomes of treatment from it. I do hope it will help my eyes weakness and hopefully decrease some of my current medications.

    • #19389
      Bobbi
      Participant

      The older I get the worse my MG symptom has gotten! It effects the muscles in my entire body.  It’s not just double vision, but my eyes would lock up and they will sometimes just not even open, my legs were very week and I would fall or almost fall, I lost most of my strength in both of my hands, I haven’t chewed gum in over 30 years because of how tired it would make my jaw, my husband passed away over 18 years ago, so I mostly eat by myself. I didn’t know that chewing and swallowing had anything to do with a symptom of what was wrong with me until while visiting my sister and her daughters that my niece ask me “Aunt Bobbi I don’t remember it taking you so long to eat- I eat real slow and you are not even half way through your food. Does it always take you this long to eat? (She’s in her 30’s, so she’s not a kid and she was asking it because she had never known  anyone to eat slower than her) I said: I guess, but I normally don’t even get stake anymore, because it’s too hard for me to chew. But that I really was craving it.” She and my sister both thought it was odd! When I started having double vision and my eye doctor said she thought that with all my symptoms that she thought I had something called MG I looked it up and it was like this is me. It was like I was reading a road map of my life and of symptom that I didn’t even know were symptom to tell the many many doctors that I’ve went to over the past 4 decades told. I did tell my gynecologist when I went in for my yearly checkup when I was like 25 about my mouth being sore and that chewing gum bothered me. I told him that my husband says I sometimes grind my teach at night. That it was getting hard to chew because of my mouth being so sore. He said it was probably from the teeth grinding and gave me a Xanax to take at bed time. Which did help with the pain, but I stopped chewing gum and never mentioned this symptom again to a doctor, I did to my dentist and he said it was TMJ and got me to a bunch of dental work that only made my mouth worse if anything. What I had to eventually do was to stop teaching I still use my education degree but in another line of work. After my husband died I started working for families that could afford to pay me to take care and teach their children which has turned out to be perfect for me. I have been working for 2 doctors and taking care and teaching their 3 boys for the past 10 years. The boys are like my grandkids I have worked for them since before the boys were born. By the time any child I teach are 2 to 3 years old they are reading phonetically and know all of their sight words. I teach phonetically from the time they’re born.
      I use to be a vivacious reader reading for five novels a week, but in my mid 50’s My eyes started becoming so bad that I started limiting how much I read to short stories, the news, the Bible, Bible study literature, researching what was wrong with me, and educational materials. The oldest child of the doctors’ is autistic, so even though I taught special Education there’s always new information that is coming out to help with his disability, Even though I don’t believe it’s much of a disability anymore. He’s reading 5 grade levels above his grade level, making all A’s in a private school that expect a lot more from the students and is doing well socially which was his biggest problem! If they still classify it that way they use to he would be classified as having Asperger’s syndrome, but they clarified it all as being on the Spectrum now.
      i had to change my job. I could’ve stayed working as a teacher, but between having to work then take work home and all the stress that went along with it my body couldn’t take that many hours. It was great during the summer, but the school year was tough! With this job when I walk out the door I don’t have to plan, grade papers, or email parents or write IEP’s you may have to do what I did back in August of 2021 my condition has gotten to the point that I had to file for SSD. You can still work part time when you file. You just can’t make more than a certain amount. Get a lawyer if you do. If you don’t you will be denied automatically…trust me it’s worth the fee they get to have someone fighting in your corner.
      especially if driving is because an issue because of double vision you will be even more likely to get fast tracked for SSD.

    • #19390
      Bobbi
      Participant

      The older I get the worse my MG symptom has gotten! It effects the muscles in my entire body.  It’s not just double vision, but my eyes lock up and they sometimes just will not even open, my legs get very weak and I get off balance and almost fall or do fall, fall, I lost most of my strength in both of my hands, I haven’t chewed gum in over 30 years because of how tired it would make my jaw, my husband passed away over 18 years ago, so I mostly eat by myself. I didn’t know that chewing and swallowing had anything to do with a symptom of what was wrong with me until while visiting my sister and her daughters that my niece ask me “Aunt Bobbi I don’t remember it taking you so long to eat- I eat real slow and you are not even half way through your food. Does it always take you this long to eat? (She’s in her 30’s, so she’s not a kid and she was asking it because she had never known  anyone to eat slower than her) I said: I guess, but I normally don’t even get stake anymore, because it’s too hard for me to chew. But that I really was craving it.” She and my sister both thought it was odd! When I started having double vision and my eye doctor said she thought that with all my symptoms that she thought I had something called MG I looked it up and it was like this is me. It was like I was reading a road map of my life and of symptom that I didn’t even know were symptom to tell the many many doctors that I’ve went to over the past 4 decades told. I did tell my gynecologist when I went in for my yearly checkup when I was like 25 about my mouth being sore and that chewing gum bothered me. I told him that my husband says I sometimes grind my teach at night. That it was getting hard to chew because of my mouth being so sore. He said it was probably from the teeth grinding and gave me a Xanax to take at bed time. Which did help with the pain, but I stopped chewing gum and never mentioned this symptom again to a doctor, I did to my dentist and he said it was TMJ and got me to a bunch of dental work that only made my mouth worse if anything. What I had to eventually do was to stop teaching. I still use my education degree but in another line of work. After my husband died I started working for families that could afford to pay me to take care and teach their children which has turned out to be perfect for me. I have been working for 2 doctors and taking care and teaching their 3 boys for the past 10 years. The boys are like my grandkids I have worked for them since before the boys were born. By the time any child I teach are 2 to 3 years old they are reading phonetically and know all of their sight words. I teach phonetically from the time they’re born.
      I use to be a vivacious reader reading four or five novels a week, but in my mid 50’s My eyes started becoming so bad that I started limiting how much I read to short stories, the news, the Bible, Bible study literature, researching what was wrong with me, and educational materials. The oldest child of the doctors’ is autistic, so even though I taught special Education there’s always new information that is coming out to help with his disability, Even though I don’t believe it’s much of a disability anymore. He’s rising 5th grader and is reading on a 9th to 10th grade level, making all A’s in a private school that expect a lot more from their students and is doing well socially which was his biggest problem! If they still classify it that way they use to he would be classified as having Asperger’s syndrome, but they clarified it all as being on the Spectrum now.
      I didn’t have to change my job. I could’ve stayed working as a teacher, but between having to work, take work home, all the stress that went along with it, my body couldn’t take that many hours. It was great during the summer, but the school year was tough! With this job when I walk out the door I don’t have to plan, grade papers, email parents write IEP’s.
      You may want to think about filing for SSD?             In August of 2021 my condition got to the point that I had to file for SSD. You can still work part time when you file. You just can’t make more than a certain amount. Get a lawyer if you do. If you don’t you will be denied automatically…trust me it’s worth the fee you get to have someone fighting in your corner. Especially  if driving is becoming an issue because of your double vision you will probably be even more likely to get fast tracked for SSD.

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