Lohman “Trey” Brooks III was once a San Francisco drummer from a musically inclined family who played in a band with one of his brothers.
But in his late teens he started experiencing a weakness throughout his body.
“I started feeling a general weakness in my arms and legs and it progressed to my eyelids,” a common symptom of a condition known as Myasthenia Gravis, Trey said, “I knew something was wrong.”
He actually diagnosed himself by researching his symptoms at the nearby Stanford University library.
Myasthenia gravis is a neuromuscular disease that annually affects about 60,000 Americans. It leads to varying degrees of skeletal muscle weakness with the most commonly affected muscles being the eyes, face and those involved in swallowing. This autoimmune disease can result in double vision and difficulties in talking and walking. Onset can be sudden.
Trey received confirmation of the disease through a blood test taken by his doctor, who put him on a standard treatment for Myasthenia Gravis; a muscle stimulant called Mestinon, also known by its generic name, Pyridostigmine, which seemed to help a bit.
But over the decades, Trey’s condition continued to worsen until he eventually became so week he qualified for disability benefits.
It wasn’t until this past year, after he was seen at HonorHealth Research Institute, that he started to substantially gain back his strength.
Dr. Anne Hatch, D.O., a Scottsdale neurologist affiliated with the Research Institute’s Neuroscience Research Division, at first put him on an anti-inflammatory medication drug called Prednisone, which provided a slight, incremental benefit: “It didn’t cure it. It just made the symptoms less aggressive. I wasn’t as weak,” Trey said.
She then suggested he try a clinical trial testing a drug called Regeneron R3918-MG-2018.
Trey still doesn’t know if he received the test drug or a placebo, but he is happy that, after decades of living with this debilitating condition, he is finally getting his strength back.
On a scale of 1-10, Trey estimates his strength was at about a 5. But now, since he began the clinical trial in early 2024, he feels he’s more at 8 or 9.
“It does work a lot better than the prescription drugs I’ve been on (and still taking) since the 90s,” Trey said. “With the clinical trial, I notice that I’m a little stronger than I have been. I have a little more strength in my eyelids, hands and my grip strength. My stamina has improved.”
All this has helped him as he cares for his 18-year-old daughter, a senior in high school, who is following in the musical footsteps of her father and family as a keyboardist who is considering going to a music college.
