Reply To: Very new to my diagnosis. A bit confused and would like anyone to weigh in.

[Community Member]

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