The Mechanic’s Crisis: Navigating MG Relapse, Surgery, and Disability

My Myasthenia Gravis (MG) journey began two years ago when I started seeing double vision at work. Initially, I brushed it off, but persistent double vision on the highway prompted me to discuss it with my doctor, who referred me to an ophthalmologist.

The ophthalmologist first attributed the vision issue to age-related eye muscle weakness, suggesting a simple prism installation in my glasses. However, he also ordered blood work for thyroid and MG antibodies. The results confirmed MG, and I was immediately started on Pyridostigmine (Mestinon) while scheduling a difficult search for a neurologist specializing in MG.

Stabilization and The Trigger

My first neurologist visit led to an increased Pyridostigmine dosage and the addition of Prednisone. Things improved so well that I was able to stop the Pyridostigmine and thought the MG might be in remission.

In late July, however, I hurt my back and underwent surgery for a herniated disc in August. After six weeks off work and during my physical therapy, everything changed.

Crisis Mode: Relapse and Escalation

Just as I was preparing to return to work, the double vision returned 24/7. Despite restarting Prednisone and Pyridostigmine, the symptoms worsened. I started feeling weak, experienced difficulty breathing (like someone was sitting on my chest), and developed slurred speech and hard swallowing due to weakness in the muscles under my bottom lip.

I contacted my neurologist’s office, but after a week of being told to simply increase my Prednisone, my symptoms were clearly progressing. Fortunately, my scheduled follow-up was soon after. Upon seeing my condition and hearing my complaints—especially the respiratory and swallowing issues—my neurologist recognized a serious flare and instructed me to go directly to the ER for an IVIg treatment.

Post-IVIg Treatment and Ongoing Management

I was hospitalized for five days and received daily IVIg treatments. The fourth treatment caused severe headache and nausea, but with supportive medication, the fifth infusion went smoothly.

During the hospital stay, my doctors started me on CellCept to eventually get me off long-term Prednisone use, which carries risks for a 62-year-old. I was warned that CellCept takes time to reach full effect.

The most noticeable improvement was to my breathing, though I still cannot lie flat and now sleep on my sides. The ocular symptoms have worsened: the double vision and blurred vision have now transferred from my right eye to my left, and my overall vision remains unreliable. I am still struggling with speech, swallowing, and overwhelming fatigue.

The Disability Dilemma

As a marine mechanic, my vision and physical strength are crucial. All these new symptoms have forced me to consider disability and early retirement—a concept that has never been part of my life plan, as I had intended to work until 67.

I have returned to work on a two-week trial period during the slower Christmas season to assess if I can perform my job at a reduced pace and if my employer can accommodate my fatigue. The outcome will be the deciding factor in whether I have to pursue disability.

I remain a person who faces challenges head-on: I believe in dealing with the cards I’ve been dealt, learning as much as possible, and maintaining a strong faith and mental attitude.