[Bobbi]

You have to advocate for yourself! I am so grateful  that they finally diagnosed me and I’m now on the right medication! Tell everyone you know that if a doctor tell you you have fibromyalgia because they can’t find what disease fits into their box, but your muscles are week and multiple doctors have said they think you have an auto immune disorder, then speak up and tell them fibromyalgia does not cause or weak muscles! One of the doctors I work for doesn’t even believe that it’s a real disease, but is a symptom of a disease! If it wasn’t for my own research and video I would still be taking medication that make MG worse! There’s Neurologist that are great and then there’s the one if the antibody test doesn’t come back saying you have MG then they don’t believe you have. 30% of people with MG doesn’t test positive for the antibodies. I’m one of those 30% they’ve test me for MG many times, but it wasn’t till an eye doctor said Bobbi I’m almost positive that you have MG , but you still need to go get a brain scan to rule out a tumor that I found out that I had it and still the neurologist that I had been going to was like the test came back negative, so you have fibromyalgia. So  I said no I don’t think so. I told him that my research said that 30% didn’t test positive for the antibodies and then I showed him videos of what happens to my eyes every night. Then he Shook his head and looked up at me and said “you’re absolutely right I’m sending you to someone that Specializes in  myasthenia gravis. Then I met the best doctor in the world! I got my life back! I’m so grateful to him for specializing in the many rare auto immune diseases! I wasn’t in his office more than 10 minutes before he said that I had MG and took me off medication that was hurting me and making my MG worse and put me on the right medication!

[Bobbi]

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.

[Bobbi]

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.

[Bobbi]

Hi everyone,

Mon the subject of spasms/cramps that will wake you up jerk you out of bed at 2:00am, 3:00am, etc…. I’ve been having them for years way before I got diagnosed with MG. I’ve tried everything from magnesium, potassium, coconut water, things that’s guaranteed to work for cramps-you name and I’ve tried it and nothing worked. This was long before I started taking Mestinon. I have been on steroids off and on my entire life for lung problems: asthma and pneumonia, skin problems of unknown origins, since I was 11. The use to radiate my feet and hands the were so bad. My MG doctor actually knew what I had as a child too. He says the only thing that can really help is to take medicine in the Xanax family at night. So he started me on that. They’re not gone, but I’m not getting up5-20 times a nigh anymore it’s more like a couple times or more if I over do it. The more I use my muscles the worse the cramps are at night. Before the start cramping my toes will start moving on their on. I can not make them make the movement they to it’s more like an electric shock is making them move, but I only slightly feel it. The within a couple of minutes of doing this my feet turn into claws. My big toes curl up and then the middle ones curl down and the little toe curls up. There’s no way I can make my feet do this myself. It so painful that even if I can barely walk I have to get up and stand and walk as much as I can to get it to stop. Nothing else work if I’ve over did it that day. The Xanax helps, but it’s the over use of the muscle with people that have MG that causes the cramps. Maybe the mastodon and steroids also make it worse, but I wasn’t on either of these when it started with me! And as to joint pain I’ve had severe joint pain since I was in my early 30’s that had continued to get worse. IBP helps but had to stop when my kidneys levels went too high. Going on a low calorie, low carb, but healthy diet has help me lose weight lower my BP and I’ve been off of all diabetic medicine for 4 years. So cutting sugar and eating healthy organic foods is definitely always a plus no matter who you are.
a little about my Journey
I’ve had, but been undiagnosed with MG since I was about 26. They kept thinking I had MS. My doctors knew I had an autoimmune disease, but just couldn’t figure out what it was and when they couldn’t they would just say you have fibromyalgia! Next special or episode or ER visit they would send me down the same roller coaster ride. I’m one of the 30% that even when my eyes started shutting and not opening (do not test positive for the antibodies) so neurologist would say of unknown origin after brain scans and test came back normal. I was even on medication that made my MG get significantly worse because they were treating me for fibromyalgia and that medicine is not supposed to be taken if you have MG. It wasn’t till I started having double vision and went to my eye doctor and she told me that there was nothing wrong with my eyes it was neurological and that she thought I had something called MG that I actually got diagnosed-well after I was referred back to my neurologist and more test, more scans and he told me again that he thought I have fibromyalgia that the test came back normal, but he would do a few more test and see me back in 2 weeks. While waiting for the test results I got on this and other MG sites and some had videos of people had up just look like me when I got home from work-by 7:00 They couldn’t open their eyes so I started taking videos like they did so I could show the doctor that no matter how much I tried I couldn’t open my eyes either after working all day.  I made several videos over several different days between the hours of 6:30pm and  7:30pm. 7:45 was the latest I could keep my eyes open-then the muscles that held my eyes open wouldn’t work anymore. When the neurologist said again that I had fibromyalgia I said no! Look at this! And showed him what he never saw during the day when he saw me. I’ve been suffering taking the wrong medicines for almost 3 decades because even doctors that are supposed to know this disorder don’t really know it! He looked at the videos and said then said “I’m sorry you’re right I’m going to send you to someone who specializes in MG. Fibromyalgia doesn’t do that!”         I Love my new doctor! He’s a good bit older than me and I just turned 63, but he’s amazing! Within 15 minutes of seeing him he told me what I already knew that I had MG. He got me off the wrong medicines and onto the right ones. It’s 1:19am and I’ve been up since yesterday at 6:15 and my eyes are still open. He’s given me my life back! I give him a hug almost every time I see him because he such a caring knowledgeable doctor that I feel saved my life!