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Hi All,
I am 60 years old and very recently diagnosed with MG, and am currently taking Pyridostigmine Bromide 270mg per day and prednisone 10mg per day. I am also currently scheduled for my first appt. with a 2nd neurologist, as I quickly realized that the neurologist I was referred to has not really been a leader in this process. Each time there has been an adjustment in medication or reports of ineffectiveness of treatment, I have had to reach out to his office. There has been no other live interface since my initial appt. He won’t answer my questions I submit through the office portal. I just get a phone call from his assistant telling me to adjust the meds. No instructions to check in, report results, etc. This approach won’t work for me. To one day go from a pretty healthy 60 year old on no medications to being diagnosed with an incurable autoimmune disease…this hands off approach with a physician is not going to work for me. Not looking for constant hand holding, but a little more back and forth is not too much to ask.
I am less than 30 days out since diagnosis, and am actually seeing some improvement in symptoms. But I suspect this was not the beginning of my journey. Christer, I wish I would have had an ophthalmologist as intuitive as yours because I think my MG was missed as far back as 2019.
I started noticing some very minor “ghosting” or very slight double vision intermittently in Fall of 2019. I didn’t think much of it, since it came and went. I chalked it up to eye strain, tiredness, etc. In December of that year, I went to see my optometrist for my annual checkup and renewal on contact lense script. She was not able to correct the misalignment within tolerances for my left eye. My appt. happened to be during one of the “ghosting” periods, but I guess it was worse than I thought. She referred me to an eye surgeon, as she thought that I was suffering from Adult Strabismus.
I saw the eye surgeon in January of 2020. He recommended surgery to correct the misalignment. My diagnosis was “Idiopathic Adult Strabismus”. The first surgery was in February. The doubling stopped for a few months, but then returned. On a follow up visit to the surgeon, he recommended a correction for the right eye. This was performed in June of 2020. After the 2nd surgery, I did not experience an doubling for over a year until fall of 2021. Again, it was intermittent. I went back in to see the surgeon and he recommended that I do some computer based eye exercises. This seemed to provide some improvement, but was not consistent.
Then, with the onset of the 2021 holiday season, things started to change. This was the first time I noticed that my right eyelid was drooping. It was very slight, intermittent, so again, I chalked it up to being tired, etc. Then, a few weeks before Christmas, the ptosis became constant and the double vision got much worse. It was also during this time that I noticed in the mirror one morning that my face didn’t look right. The right side of my face was sagging and the corner of my mouth on the right was lower than the left. This definitely got my attention, because now I was thinking either a mild stroke or Bell’s Palsy or something was going on.
This post is becoming really long…sorry. Since January of this year, I have seen my PCP, a neurologist, had a head CT, chest CT, MRI, MRA, bloodwork, which showed really high AchR numbers, confirming the MG. Scans have been clear, no thymoma, for which I am very grateful. Most of this ordered by the neurologist, which I am grateful for, but to echo what most everyone here is saying, this isn’t a , “just take this and I will see you in a couple of months” type of disease. Thus, the upcoming new patient appt. with another neurologist to try to partner with.
I can’t help but think this all began, albeit, very gradually, back in 2019. I wasn’t showing any other symptoms other than the double vision, so clinically, I guess I didn’t present as an MG patient. But somewhere during this eye surgery process, I wish the doctor would have ordered a AchR test. His website even shows that he has MG patients and performs Strabismus surgeries to help with the Diplopia. It seems to me at 58 years old, and you suddenly develop double vision, idiopathic should not be the goto unless your doctor does some testing for possible reasons to rule out other causes.
Now I have concerns that because the anatomy of the muscle structure of both eyes is different due to the surgeries, is that going to complicate the resolution or improvement of the Diplopia? I am hopeful but, again, it is still very, very early in the process.
Also immersed in research for diet and exercise changes, possible supplements to add and anything else I can find.
Thanks for reading. I am grateful to have found such a great resource and is a comfort to know there are others who can understand the experience.