Ann is an assistant District Attorney in Brooklyn, New York.
We met her in Bellingham while she was having an extended stay with her daughters, to recouperate from a recent “flare”, as she described it, and she shared her story with us.
2013, Brooklyn, NY, Ann presented with a unique set of stroke-like symptoms. Her vision blurred, her cognitive function dimmed, and she had high blood pressure. Fearing prejudice and judgement, Ann didn’t disclose these symptoms to anyone in her personal life. She went to one doctor who diagnosed her as having a stroke and told her to go to the hospital. Ann made her way the hospital alone on the subway.
Once there, she was admitted and diagnosed as having Transient Ischemic Attack. The MRI’s that were done showed none of the telltale MS lesions. It felt as if the hospital staff were just shuffling her through a machine without no interest in her as a person. Ann was discharged from the hospital in the morning, without any diagnosis. A friend picked her up from the hospital and deposited her at home.
Home from the hospital with no diagnosis and no conclusion, Ann’s condition worsened. The right side of her body was freezing up intermittently. She went to physical therapy looking for help, but they didn’t want to treat her.
At this point, Anne was on temporary disability from work (14 weeks), she had lost a tremendous amount of weight, and she was experiencing pain in her abdomen. She had severe anxiety, insomnia, and psychosis, along with high blood pressure and headaches.
Using a cane to help her walk, she went to see a neurologist, presenting with all of these symptoms and the story of her hospital visit. To her shock, the neurologist actually yelled at her, “you’re malingering, go back to work.” Unsatisfied with this dismissal, Anne got a 2nd opinion from another neurologist who decided she was having heart issues, even though none of her test results supported that conclusion. She got a 3rd opinion from Dr Siller at NYU, who did better MRI scans of her brain, which showed one lesion on her brain. He told her, “you may have a mild MS”, but offered no particular solutions or treatments.
By October of 2013, Ann was still having severe cognitive and psychological symptoms. She was depressed, she was consistently dark and moody, and she felt disconnected from herself. Her temporary disability from work ran out, so she returned to work. Back at work, she continued to decline over the next couple of months.
In March 2014, after watching her decline and not knowing what else to do, a friend took Ann to the United Methodist Psychiatric Ward. Her experience at the psych ward was terrible, and she left to go stay with another friend. Before long, friends and family grasping for options, Ann was taken to the NYU Psych ward, hoping for a better outcome.
The NYU psych ward staff assumed she was having a psychotic episode. The attending doctor suggested ECT (electroshock therapy) to Ann’s sister. With low expectations, but running out of options, they decided to try it. Increadibly, electroshock therapy brought Ann back to herself immediately, as if a switch had been flipped. She received six treatments in total, after which she went home, returned to work and seemed to be fully restored. For the next four years everything seemed fine and Ann assumed the whole experience was a fluke.
In July, 2018 Ann went for a short jog after work and noticed some tingling and numbness in her limbs. One week later, she had so much loss of motor function that she couldn’t walk. She took short-term disability (12 weeks) from work. She couldn’t do errands or basic chores, and she was experiencing extreme fatigue with a terrible pain across her abdomen.
Ann started seeing doctors again, complaining about the pain in her abdomen. She received many different diagnoses of intestinal issues, none of which seemed to help. Finally, in conversation with her daughter Tamar, a nauturopathic doctor herself, Tamar wondered if her mother was describing the “MS Hug”, a commonly experienced ms symptom.
This question led them to an appointment with a Neurologist in New York who prescribed a very low does of Gabopentin and ordered another series of MRI scans. There was no improvement. Two weeks later, Ann had a whole series of MRI scans, after which she was sent to NYU Lutheran for steroid infusion treatments and more MRI scans, which showed active lesions in her brain.
After the steroid treatments, Ann was sent home. But she was still deteriorating. With severely diminished cognitive function, she had a hard time taking care of herself. She couldn’t even take care of her cats. She wasn’t eating well, and once again she seemed to be an entirely other person. At this point, her family stepped in to take action. Ann’s niece found sub-letters for her apartment in Brooklyn, and Ann’s daughter Tamar brought her to Bellingham. Under care from her daughters and extended family in Bellingham, Ann found respite but continued to deteriorate.
In April 2019, they went to Swedish Medical Center in Seattle, where Ann was told “oh, your MS is a non-event” because she didn’t have significant symptoms of physical limitation. At wits end again, and remembering the seemingly miraculous recovery from years ago, Tamara took Ann to the Geriatric Psych unit at Northwest hospital, where Ann received another electroshock therapy treatment. As before, she experienced an immediate recovery, as if a switch had been flipped.
At the time of this writing, Anne is still in Bellingham recuperating, spending time with her daughters and her grandchildren, and taking classes at the local community college to keep herself occupied. We first met her when she came to our group meeting with her daughter Tamar in October 2018. At that time, Anne had just recently arrived in Bellingham and she was still recovering from the steroid treatments. I remember the dark cloud of frustration and fear that she carried.
When we saw her again at our monthly group meeting the following February, it was indeed as if a switch had been flipped. Post treatment Ann is bright, lively and articulate. She has filled her recovery time in Bellingham with academic classes, spending quality time with her family, babysitting her grandchildren, and hosting dinner parties with friends from the MS group. She is planning to return to her apartment in Brooklynn and her work at the District Attorney’s office in July 2019.
Listening to Ann tell her story, we were all struck again by how many of us share similar sagas and how often the psychological symptoms of MS can be overlooked and ignored. Ann’s story helps me to see my own experiences of psychological disruptions in my MS journey more clearly.