Less than a month after being discharged from the hospital (Feb 2013), Jimmy's symptoms worsened and new symptoms arose. I took him to see the neurologist that diagnosed him with muscular sclerosis. The neurologist noticed that Jimmy had hearing loss and loss of balance which was affecting his gait. The neurologist stated that these new symptoms were troublesome and are not typical causes of muscular sclerosis patients. He ordered him to have a follow-up brain MRI; however, per the medical staff on duty, it was going to be at least a week until Jimmy was able to have one done due to the insurance requiring 5 business days for a referral. This was unacceptable; therefore, I ended up taking him to the ER at MGH (Massachusetts General Hospital-Boston). He was admitted and another brain MRI was performed. His brain MRI showed an increased number of lesions, which were the cause of the newer symptoms that arose.
In Feb 2013, the Chief of Neurology with assistance from a team of Neurologists at Massachusetts General Hospital, Brigham & Women's Hospital, and various uvea scans performed at Massachusetts Eye & Ear Infirmary-Boston, Jimmy was diagnosed with a rare autoimmune disease called Susac Syndrome (Retinocochleocerebral Vasculopathy). This type of encephalopathy is caused when there is no blood flow going through the brain. The neurologists are not sure what causes Susac Syndrome; therefore, Jimmy is left with the unknown. He was used as a case study due to the disease being so rare and limited documented research. He was treated with prednisone and IVIG again, but with a much higher dose. This didn't seem to do the trick as he continued to get worse per the brain MRI's, uvea scans, and visual/internal symptoms. He had 2 mini-strokes that resulted in abnormal/spastic gait for quite some time. He depended on medical equipment such as a commode, bath tub bench, wheel chair, and walker. His cognitive/memory loss worsened, hearing was more impaired, blurred vision, abnormal/spastic gait, clonus in both legs, numbness in right leg/foot, and urology dysfunction.
In mid-March 2013, the MGH neurology team decided to treat Jimmy with chemotherapy. He received 5 intravenous rounds of this as an inpatient up until May 2013. The 5 rounds of chemotherapy had finally suppressed his brain better where the lesions no longer grew. Unfortunately, they didn't decrease either. He had to wear a full-time foley catheter as he was diagnosed with urinary retention.
From May-June 2013, Jimmy was an inpatient at Spaulding Rehabilitation - Salem. During his stay, he received physical therapy, occupational therapy, steroids, and other various medications to prevent infection.
After many months of IV chemotherapy, oral chemotherapy, steroids, and various oral medications as an inpatient he came home. Jimmy received home medical services for a couple months. His frequent brain MRI's showed no new active lesions/growth for about year. However, shortly after that year mark, Jimmy's symptoms worsened and new symptoms once again arose. He started getting more severe headaches/migraines, more severe spastic gait/off-balance, more severe numbness in right leg, and abnormal bowel movements. Jimmy uses a straight catheter three times a day as he continues to have urology dysfunction and continues to use various medical equipment for support.
Recently Jimmy relapsed, as follow-up visits to MEEI and MGH-Boston showed re-occurrence of active retinal vasculitis, worsening symptoms, and new spinal cord symptoms. Currently Jimmy is an inpatient at MGH Boston receiving 5 rounds of high dose IV steroids and chemotherapy.
Currently there are only approximately 312 documented cases of Susac Syndrome world-wide. This encephalopathy has left Jimmy disabled where the majority of his days, other than hospitalizations and medical appointments, are spent home bound. Suffering from this encephalopathy has become a huge roadblock in his life mentally, emotionally, and financially. This has taken an emotional and financial toll on my family and I as well.
It has become financially difficult for Jimmy to live comfortably due to a number of medical and living expenses in the last year along with not being able to return to work. Much of the treatment Jimmy is currently receiving is considered 'experimental' and may not be covered by his health insurance. Jimmy would like to one day be able to return to his workplace where he managed 186 employees and from what his company tells me was very much respected for his managerial skills and work ethic. Our family and friends are praying for a miracle that we can get this neurological disease under control so Jimmy can have a better quality of life.
Please keep Jimmy in your prayers. We appreciate your support and will continue to provide updates on Jimmy's condition. God Bless!
Melissa DaSilva (Jimmy's sister)
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