[John W Carnahan]

I was diagnosed with ocular myasthenia gravis in October, 1974. Because we moved across country a number of times in the following years,I have had more than a dozen neurologists, each of whom wanted to try mestinon as the main medication to control double vision and drooping eyelids. In every instance, I was moved to Prednisone which is the only drug that offered some control. Even when the prednisone was effective, it was often only partially so. While taking prednisone (which I have done for nearly fifty years) I had to wear an eye patch on one eye or the other to be able to function on a daily basis. The eye patch period lasted more than 25 years. Still, I was able to work every day, obtain two master’s degrees, work as a non profit executive and teach graduate school for more than a decade. I still suffer periodic lapses when I need to go from 7.5mg/day to 40mg/day to get the ocular MG under control, and those periods usually last about 5-6 months from onset of symptoms to the time when they are under control.

[John W Carnahan]

I have received all four Pfizer shots, felt okay other than a one day sore arm. However, I was tested for antibodies twice during the period of vaccinations, once after the 2nd shot (no antibodies or T or B cells detectable) and once after the third ( some unnamed amount of antibodies, not encouraging).Am now waiting to get tested again after the fourth shot. More later!

[John W Carnahan]

I don’t know if my comments will be of any help, but I am 79 years old, and have had ocular mysthenia since 1973, My first symptom was also double vision, but I had no luck having myasthenia diagnosed until the following year. The double vision lasted throughout the first year, but it was ptosis that sent me in search of answers. Since that first diagnosis I have been on Prednisone in various dosages for more than 47 years, until four years age when Mycophenylate was added. Medication has been successful in keeping the worst of the symptoms in check, but I have had numerous exacerbation’s over the 47 years. I don’t recall any warning signs that a change was going to occur. In fact, seemingly random occurrence of symptoms, or worse symptoms, has been the predominant course for my MG.

One of you questions concerned the cumulative nature of MG. I can’t speak for others, but my MG has never shown anywhere but my eyes, which I suppose makes me one of the lucky ones.

Your question about lifestyle changes and the possibility that they may improve the MG, once again I can only speak of my own experience.  When I contracted MG I was drinking more beer per day than was probably good for me, but I continued that pattern until about 1990 when I switched to wine, which I then drank daily up until  last year, when I suddenly lost my sense of taste and sense of smell. The literature says that loss usually goes away, but so far it hasn’t.  What I have seen in my own case and in a number of others is that MG seems to be a very individual disease. It seems to come at people differently, responds differently to whatever medication you are taking, and defies any notion of predictability. Having said that, little of what I said will be of use to you, since you may not react to medications as I did, nor will anyone else’s experience be of much use to you.

But I must say that for all the forty seven years of my MG I have led a good life and tried to respond as knowledgeably as I could to each twist and turn the MG threw me. Best regards, John Carnahan

[John W Carnahan]

Looking at the other responses, I guess I have been pretty lucky with my ocular MG. Diagnosed in 1974 at the age of 32, I was in a very competitive graduate school environment. Drooping eyelids and double vision seemed like an impediment at first but, after beginning treatment with Prednisone and learning to function while wearing an eye patch, graduate school fell into a near normal pattern. That feeling of near normalcy continued for the next 40 years as I pursued a career in museums and later a broader variety of non profits. I also taught in graduate school for ten years at the end of my “career” developing curricula along with the teaching. My good fortune was in having ocular MG only which allowed me to function easily on a daily basis.

[John W Carnahan]

I have had ocular MG since 1974 without any period of total remission, but I managed to work through the double vision and ptosis by wearing an eye patch off and on. The biggest problem was the inadequacy of commercial eye patches. My wife and I figured out a pattern that allowed total covering of the eye (they switched back and forth sometimes, so I went to work one day with my left eye patched and the next with the right eye under the patch)and she cut out the patches and a thin cardboard liner, sewed them tougher and attached a thin elastic band. We must have made hundreds over the years because after a while, because of perspiration or wear and tear, they needed to be replaced.

 

[John W Carnahan]

I had my second Pfizer vaccination on March 23, 2021. Fourteen days later my right eye stopped tracking to the right, resulting in double vision. The neurologist treated it as an MG exacerbation and we increased my Prednisone dosage from 7.5mg a day to 30mg a day. That had no affect so he prescribed two courses of IVIG, which also had no impact. I then lost all sense of smell and taste, a condition that has recovered, but only intermittently. Neither the neurologist nor a Neuro-ophthalmologist would attribute the exacerbation to the vaccine, simply recording it as an MG exacerbation.

I have had ocular MG since 1974 and have had many exacerbations during that time, but never like this one. Oddly enough, while in the ER for another reason, the double vision and the right eye tracking returned to normal. I have since managed to reduce the Prednisone dosage back to 10mg/day.