Newly Diagnosed OMG

I initially just had Ptosis, e which began in January of this year. My 16 and a half year old heart dog had just passed away and I had been practically nonstop crying for a few weeks. I honestly thought that was the reason for it, from crying so much. It made sense to me. It was getting worse, and I was beginning to have some occasional double vision. I had coincidentally also just picked up my glasses with a new prescription a few weeks after my dog had passed. I became determined that the prescription must have been done wrong. I kept taking my glasses off and putting them back on, thinking my eyes would somehow adjust to them and come into better focus. It never occurred to me that anything else could be going on, and it was just a combination of all the crying and something being off with my new glasses. I finally made an appointment with my ophthalmologist. I told him about all the crying I’d been doing. I had him check the prescription of my lenses and compare it to the what had been prescribed at my last appointment. Again, certain this was what the cause of it all was. He told me that it was not possible for the crying to cause either of these symptoms. He did check the lenses and the prescription was correct. He did a couple quick diagnostic tests, none of them involving any eye exam equipment, which I couldn’t understand why, and he said, “You have Myasthenia Gravis. You need to see a neurologist.” Obviously it was not something I’d ever heard of before. I already had a neurologist, so I asked it to be written down so that I could tell them at the office when I called to schedule an appointment. I couldn’t get in for a couple weeks or so, though didn’t really feel a huge urgency at that time, and so I was fine with that. In the meantime however, my double vision got progressively worse. I was not able to see well enough to drive. Even walking was a challenge, and so I walked around with one eye shut. I called my neurologist’s office and they recommended I go to the ER. I was reluctant to go that day, mostly because it is always so busy there that the wait could be as many as 8 to 10 hours. I know now, this was not the best mindset. The next morning though, I had no choice but to go. I actually was taken in right away, even before being fully registered, having not given much more than my name and date of birth, and describing my symptoms. The reason they took me so immediately, was because they had to check if I had had or was having a stroke. They checked my vitals then I had a CT scan without and with contrast right away. I answered a million questions the resident asked. He also did some diagnostic tests. I don’t remember if I had told him about having seen my ophthalmologist or about the MG. So much was going on that morning. They did a slew of blood tests. I was then brought to a curtained off area while I waited for the on-call neurologist. After quite some time, the intern came. He asked a lot of questions, and again, more diagnostic tests. He ordered some more blood tests to be run from the blood they’d already drawn earlier. Eventually, he came back with the neurologist. I was asked the same slew of questions, and had the same diagnostic tests performed. The neurologist told me I have Myasthenia Gravis, though that for an absolute diagnosis, I’d need one more blood test to be run. He wanted a clean blood draw for it, and so had them take it from my other arm. The only thing was, that it would take 7 days to receive the results. He did explain, or attempt to explain I should say, about MG to me. I had no idea what he was talking about because he was using terms I could not understand. About the only thing I caught was that it is a rare neuromuscular autoimmune disease. He told me I must see a neurologist. I told him that I had an appointment scheduled the following week, and the neurologist it was with. He was very glad to hear this, as it was one of his colleagues. He sent over a prescription to my pharmacy to get me started on Pyridostigmine, and briefly described potential side effects. Prior to discharging me from the ER, the neurologist had me place icepacks over my eyes for a period of time. This actually helped tremendously. When I went to my appointment with my neurologist the next week, the same battery of questions were asked, plus more, and additional diagnostic tests were done. By then, he had also received the results of the blood test confirming that yes, I do have MG. He explained it all very well to me, in great detail and using examples and making analogies. He used terms I could well understand. He answered whatever questions I could think to ask at that time. He really is a great neurologist. I have so much confidence in him. I have been seeing him for a few years for an unrelated issue, and have a great level of comfortability with him. He did increase the dose of Pyridostigmine, and I set up a followup appointment to see him again in 3 weeks. My symptoms did start to improve until about a week and a half later when they totally worsened again. I called his office to explain what was going on. I was told that he was off that day, though that they would send him the message. A very short time later, I received a call from him. He decided to add prednisone and wanted to see me the following week. The prednisone did help, and the symptoms resolved once again. After a couple months, I began having double vision again, mostly beginning late in the day or early evening. I communicated this to my neurologist through the patient portal. He always responds fairly promptly. He decided to add Vyvgart IV infusions. That was about 5 weeks ago. I am finally going to begin in-home treatment next week. The reason for such a delay, is because that is how long it took to get everything in place, approved by my insurance company, and to find an in-network agency. It has been a long process. I am very hopeful that I will have good results. My neurologist ordered a revolving cycle of 4 weeks on/4 weeks off which is the norm as I understand it. He did also say that if I do tolerate if well, we can try switching to self-injections. I am feeling a bit anxious about beginning the infusions, mostly because it is something new to me and I don’t yet know what to expect. I am curious if others have been able to transition to self-injections, and how that went. Another big worry I have (unrelated to beginning Vyvgart), and I have discussed this with my neurologist, is that my OMG will progress to generalized MG. He did explain to me that MG is not progressive, that there is no way of knowing how it will affect my body over time, and that it affects everyone differently. Even still, I’ve read of so many starting out with OMG and then beginning to have symptoms of GMG. I’m interested to know about others who have OMG who have had only OMG all along. It has been a LOT since having received my diagnosis, which was only 4 months ago. It’s taken not only a physical toll on me, though also has very much affected me mentally and emotionally. I’m doing my best, and just take it day by day. I’ve ready of so many others having gone years, not receiving a proper diagnosis. I guess at least it is a positive that I was diagnosed right away upon the onset of my symptoms and deciding to see my doctor.