My Journey With Multiple Sclerosis: A Journey of Discovery
Updated: Apr 20, 2021
I met Judy during my senior year of medical school. After graduation we attached our two cars together and started our adventure across country to Los Angeles. We detoured to Denver, Colorado to join friends and to be spontaneously married June 18, 1968. We had briefly discussed each other’s various infirmities. Mine was one of a hereditary bone condition that had required numerous surgeries which Judy had already researched. I knew very little of her medical history but was aware of time off from work because of a drop foot and difficulty with vision out of one eye. She raised an issue of possible Multiple Sclerosis (MS). Being quite naive at the time, we had no idea of the implications and meaning of the words “Multiple Sclerosis”. We honeymooned the rest of the way arriving in Los Angeles in late June and settled in South Pasadena.
On July 1st, I began my internship at Los Angeles County USC Medical Center. The Vietnam War had heated up; and as a physician my 4-F status was changed to 1-A. LAC-USC Medical Center’s house staff was huge. One half had already served in Vietnam and the other half listened to their war stories. As a result, I decided I wanted no part of Vietnam. I had planned and was admitted into several psychiatric residencies but without a military deferment I couldn’t proceed. In I969, the army had drafted too many physicians. As a result, they offered one-year deferments which I enthusiastically accepted, but psychiatric residencies wanted 3-year continuity and refused to admit me. Rotating on neurology at the time, residency positions became available. I thought a year of neurology would be helpful in a psychiatry residency and I filled the spot. Several months into the neurology program, I was granted a 3-year deferment in psychiatry. I found neurology fascinating, and I signed on the dotted line to complete the three-year residency.
During that first year of residency, Judy was employed by Los Angeles Children Hospital as one of the first pediatric dialysis nurses. She had several episodes of numbness and tingling moving up from the feet to the waist. I was concerned about the stress of working nights, but she wasn’t. We decided to seek neurological consultation and made an appointment with one of my favorite professors. She met with us, took a history, performed an examination, and promptly informed us that the diagnosis was multiple sclerosis. This was immediately followed by her major advice, “you should have no children.” Having reviewed the literature on pregnancy and MS, I had consumed several articles that reported no adverse effects of pregnancy and in fact stated that there may be benefit. Subsequently, I learned my professor was influenced by a painful experience of an “n of one” (a single patient) who deteriorated and became severely incapacitated in the middle of her pregnancy. For the next twenty minutes, the professor described in vivid details her own children. Until much later in my career, I did not recognize what impact, her true lack of empathy had on Judy and me.
We went on to have two normal and uneventful pregnancies. A daughter was born and immediately afterwards an IUD was placed for contraception. Ten and a half months later, my son was born. Only afterwards, did we discover that at the time of IUD insertion, it had penetrated through uterine wall and settled in the left pelvic gutter. After the children were born, Judy never returned to work. Caring for two “Irish Twins” was a challenging task and required 181 diapers per week (pampers were not as readily available at the time).
At the end of residency training, the Army decided they didn’t want to assume my medical care the rest of my life and I was discharged. I joined the neurology department of Kaiser Permanente in San Diego as the first full time neurologist. In the early years not only did my practice encompass all adult neurology but also pediatric neurology. I was made Chief of Neurology in 1973 and began to build a department that ultimately consisted of one pediatric neurologist and 9 adult neurologists.
As the sole neurologist in the group, I was busy working day and night. I engaged and fathered the children to the best of my abilities. In our household, Judy practiced the “no talk rule” when it came to MS. As denial was her major coping defense mechanism, I passively concurred. She did not discuss nor complain to any of us her MS related symptoms. She would occasionally have numbness and tingling that would come and go. She rationalized that there was no treatment and scarred by her initial interaction with the professor, she sought no medical care. She remained amazingly healthy and active, and we were a family no different than any other. We learned to ski together, which she did without any difficulty. What became evident to me over the next 14 years was a gradual progression of impaired walking. This culminated when she watched the video of a family milestone celebration and suddenly commented, “Oh my God is that the way I walk”.
In the 1970s and 1980s, no disease modifying therapies existed. Dr. Rose, Professor at UCLA and one of the major thought leaders of the time, published one of the first randomized control trial for relapsing and remitting MS with intravenous ACTH versus placebo at the time of relapse. This required short term hospitalization. The results reported that exacerbations resolved quicker with ACTH compared to placebo, but treatment with ACTH did not change the course of the disease.
In May of 1977, she found a lump in her right breast. Initially it was like a small pebble that could hardly be felt. A month later it was obvious and the head of the Department Surgery at the time commented, “it was nothing, but we should remove it.” Immediately following the biopsy, he informed us that the frozen section confirmed adenocarcinoma of the breast. He must have thought we were in denial for he repeated over and over again, “this is cancer, cancer”. A right modified radical mastectomy and axillary node dissection followed. There was no follow up therapy other than making sure that the incision had healed. As the Chief of Surgery, he did not believe in a comprehensive breast program that utilized the support of other additional health care providers. Reconstruction was not discussed, and she was satisfied to use a prosthesis.
Over the next five years her MS symptoms of unsteadiness, tingling and numbness would come and go, but at no time did she complain, nor did this interfere with her level of function. We still practiced the no talk rule. At the five-year mark, a supraclavicular node indicated tumor reoccurrence with a biopsy confirming the identical original tumor. She underwent radiation therapy to the right neck and the internal mammillary chain. We then sought an opinion from the head of oncology at UCSD. As he was a pioneer in the use of adjuvant chemotherapy, we launched into a 6-month course. At the 3-month mark, the chemotherapy regime resulted in a complete destruction of all her white blood cells to zero. A 10-day hospitalization with IV antibiotics prevented infection and the count returned to normal.
This turned out to be an incredibly fortuitous event. What we noticed over the next several months was that her MS improved dramatically, and all symptoms disappeared. Simultaneous to this event, Dr. Howard Weiner from Harvard University, published the first article that outlined use of Cytoxan for the treatment of multiple sclerosis. This was one of the drugs used in her chemotherapy regimen for her breast cancer reoccurrence. For the next 18 months Judy returned to total normal function and it was if her multiple sclerosis did not exist.
However, as reported in the literature, 18 to 20 months after the initiation of chemotherapy, symptoms returned, and she developed a slowly progressive course. In the early 1980s, at one of our Academy meetings, I met Randy Schapiro for the first time. He was practicing in Minneapolis and had a huge MS practice. It was refreshing to interact with somebody whose philosophy was similar to mine. He was the first individual who did not just “diagnose and adios” but believed that MS symptoms could be treated effectively. He was charismatic, enthusiastic, and thus began my MS education.
My neurology practice remained relatively generalized but emphasized neuro-oncology and neuropsychiatry. Then, in 1988, three years of suffering in relative silence, progressive headaches became so severe and intolerable that Judy finally agreed to see a neurological colleague who ordered her first imaging study, a CT scan. This showed hydrocephalus, enlargement of her ventricular system, along with a large cystic structure with a small nodule in the cerebellum, the coordination area located in the back of the brain. Upon my review of the scan, the cystic tumor did not appear to be consistent with spread of the breast cancer to the brain. At noon we saw the neurosurgeon who hospitalized her and operated the next morning. She had a stormy postoperative course with some lethargy but gradually improved. The tumor was not breast cancer but rather a relatively benign tumor originating in the brain and diagnosed a ganglioglioma.
On a one-month post-operative visit, the neurosurgeon could not understand why her walking had not improved as he had anticipated. He did not appreciate the comorbidity of MS. She underwent her first MRI scan and it showed some white matter changes but not as severe as I had anticipated. From this point on, denial disappeared, the no talk rule was broken, and she became involved in the MS community. She joined a support group which she ultimately chaired as the group leader holding the meeting in our living room. She was placed on the first Patient Advisory Board of the National MS Society and was instrumental in establishing the guidelines for structure and function of MS support groups. She served with me on the first MS guideline committee for the evaluation and treatment of Fatigue. My practice subsequently expanded in MS ultimately reaching over 300 patients.
Judy often accompanied me as I travelled extensively for business. She and I often met with patient and professional groups as motivational speakers. We would share our story and our life experience to date. These presentations created an environment for interactivity and dialogue. We both found this a very meaningful and healing experience. In addition, as a family, we travelled together for pleasure across the globe. We became adept at dealing with the airlines, transporting our manual and power mobility devices. We became very skilled and knowledgeable at adapting and creating solutions to different challenges to improve our quality of life.
In 1993, Betaseron® became available as the first FDA approved treatment for MS. This was met with huge excitement but some skepticism. We were introduced for the first time to the details of how a “clinical trial” demonstrates efficacy and side effects. This disease modifying approach was never anticipated to be so successful and has been followed by the licensing of 16 FDA approved medications.
The first clinical trial for secondary progressive MS was a multicenter national and international effort. I was the Principal investigator for the San Diego Kaiser site where we enrolled over 30 patients. At the time Judy was 14 years disease free from cancer. She and I talked over her participation and obtained several professional opinions. Ultimately, we decided to pass. It was good thing as one year later her cancer returned in her chest. If she had participated, we might have blamed the reoccurrence on Betaseron®.
In October 2003, for treatment of metastatic cancer to the skin in the left supraclavicular area, radiation therapy was administered on two separate occasions. Because the right neck had been previously radiated, complete loss of autonomic function followed as an adverse event. Severe orthostatic hypotension made it difficult to go to a standing position because of a large drop in blood pressure. Her gastric emptying slowed considerably, and weight loss followed. At 108 pounds, a percutaneous gastric feeding tube was not approved, and only when her weight reached 85 pounds was it prescribed. As her needs increased, we hired a caregiver. Not realizing that she had extensive metastatic disease, the entire family spent ten days in New Zealand over the holidays. During the visit, she became quite debilitated limiting our travel within the country.
On our return, we remained in denial. By the third week in January, she was hospitalized because of a pathological fracture of the radius and general debilitation. Only then was extensive metastatic disease diagnosed and upon discharge she was placed on hospice. During her last week, we were all present taking turns at the bedside. The clergy, who we had sought consultation with 6 months before, were very comforting. The last hours she refused any pain medication and was totally awake and aware. About five minutes before her last breath, she asked my daughter and I “What Shall I tell Him?” We answered, “you tell him you are a wonderful person who has led a very loving life and that he should welcome you with open arms.”
In 1986, I joined the Practice Committee of the American Academy of Neurology. and became the first chair of the Academy’s initial guideline committee. I put together a group of diverse neurologists with a wide variety of expertise. This committee established and legitimized outcomes and evidence-based medicine in neurology. The process changed my life and practice beginning my ongoing experiential fellowship and education in Multiple Sclerosis. I am indebted to my patients, colleagues, Pharma, and our educational meetings. I have attended yearly the American Academy of Neurology (AAN), European Consortium in the Treatment and Research in MS (ECTRIMS), the Consortium of MS Centers (CMSC), and the American Consortium for the treatment and Research in MS (ACTRIMS). It is at these venues where the latest scientific research is presented, controversy is highlighted, and meaningful interchange occurs between thought leaders. The proceedings are published in peer reviewed literature. Thus, with my patients and a positive relationship with all of Pharma, my educational process and experiential fellowship continues.
I hope that this blog will be ongoing, educational, and meaningful. I dedicate the blog to Judith Ann Rosenberg. There is an ongoing fund at the American Brain Foundation in her name at the American Academy of Neurology.
Written By: Jay H . Rosenberg, MD
Keywords: MS, Multiple Sclerosis, Metastatic Cancer, Tumor, Neurology