Help Rachael battle MOG

My niece, Rachael, is only 23 years old & lives with her husband, Jason. In early April, she & Jason were able to take a long awaited trip to the Big Apple & had a great time taking in all the sights. When they returned home on April 10th, Rachael almost immediately began to complain of a headache above her eyes & towards the back of her head, a stiff neck, eye soreness & sensitivity to light. 

Anyone who knows Rachael, knows that her family means more to her than anything & you wouldn’t need to look any further than her FB page for evidence of that. She adores her 3 younger siblings, Olivia, Alyssa & Ethan & never misses an opportunity to post pictures of them. On Saturday, April 13th, even though she was feeling lousy, Rachael sat through their 7 hour gymnastics meet to show her support. It was at this gymnastics meet that she really began to realize that her symptoms were only getting worse. Her neck was becoming so stiff that she struggled to watch some of the events. 

The following day, April 14th, Rachael went to an urgent care center. She was diagnosed with a migraine & sinus infection & was prescribed a steroid & the antibiotic, Amoxicillin. For the next 5 days, she took those meds & tried to rest. She never really felt better at any point. The head & neck pain were relentless & her symptoms always seemed to worsen at night making sleep difficult. By Saturday, April 20th, her pain was so intense that Jason decided to take her to the emergency room. After 5 hours in the ER, they were told again that she had a migraine & a sinus infection & she was sent home. 

On April 21st, Easter Sunday, Rachael began vomiting around 4am & had become extremely weak. All other symptoms were still intensifying. While she didn’t want to go back to the emergency room, Jason insisted she should & helped her into the car. They had no idea that her original diagnosis of a sinus infection & migraine was slowly turning into what would become the fight for her life. 

Her symptoms were now presenting as meningitis & she was admitted for her first hospital stay. They began a number of tests to determine if she was suffering from bacterial or viral meningitis & also explored the possibility that she had contracted something on their recent trip to New York City. Bloodwork showed that her white cell count was elevated, 108. They ruled out ailments such as the flu, West Nile & Lyme disease. They conducted a lumbar puncture, a CT scan & a 25 minute MRI. Unfortunately, because she had been taking a steroid & Amoxicillin, she was difficult to diagnose as those medications can mask the causes of her illness. After 4 days, they concluded that she had viral meningitis & she was discharged on Wednesday, April 24th. She was prescribed medication for pain & nausea & was told it could take up to 3 weeks to fully overcome this. 

While she she was still very sick, she did ok at home for a few days with the round the clock care of Jason & her family. But around the 3rd day, Rachael’s health began to worsen again. She still suffered from severe head & neck pain & nausea, but now she was experiencing dizziness & having trouble walking. By Saturday, April 27th, she could not walk on her own. Assuming that she had become dehydrated, Jason & her Aunt Sara helped her into the car & the headed back to the emergency room. 

Given her deteriorated condition, she was admitted for a second time. Her bloodwork showed that her white cell count was now 2400. On Sunday, the 28th, they conducted a more thorough 45 minute MRI. This MRI showed 3 or 4 lesions on the outer surface of her brain with smaller lesions to the inner brain & a 9cm mass on her liver. It was at this time they used the word cancer. More specifically, lymphoma & liver cancer. We were shocked & devastated & Rachael was terrified. They explained the different tests & scans they would administer the next day. 

On Monday, the 29th, the rollercoaster ride began. Rachael had 6 teams working her case- neurology, ophthalmology,  internal medicine, infectious diseases, hematology & oncology. While they were leaning towards lymphoma or a bacterial infection, nothing was completely off the table. Early in the day they did another lumbar puncture, a PET scan & around 3:15pm they took her for a 90 minute MRI. During her MRI, we were briefed by the different teams. The PET scan showed no signs of cancer. The mass on her liver was benign & they were back to suspecting an infection but all tests were coming back negative or inconclusive. They assured us they were going to keep running labs & we were happy that it seemed like cancer had been ruled out. 

Our excitement did not not last long. Towards the end of her 90 minute MRI, Rachael told her nurse she could not see & she began to vomit. He pulled her out & rushed her back to her room somewhat unresponsive. We were quickly cleared out & they worked to stabilize her. She was given a steroid around 5pm & she did regain her sight, but now her speech seemed to be affected. 

As Monday evening went on, Rachael’s condition only deteriorated. She was moved to the Progressive Care unit. Around 8pm, she would lose her sight again & she struggled to utter just a single word. She lost all motor skills with the exception of being able to softly squeeze her mother’s hand to answer “yes” when asked questions & her breathing became labored.

Around 10pm, she was given a thorough eye exam. Her vision was completely black. The ophthalmologist took Jason & her parents into the hall & delivered the news that although her eyes looked good, he could not say if she would see again due to the inflammation surrounding the nerves. Her mother, Lori, demanded that they contact the neurologists who had seen Rachael earlier in the day. Lori pushed for a steroid. Doctors had been hesitant to give her further steroids because they didn’t want it to mask the results of the lymphoma tests scheduled for Tuesday. Once they were briefed on her rapid & continued deterioration, they agreed that they needed to act quickly. Rachael was moved to ICU & they administered a steroid shortly after midnight.

Within a few hours, Rachael spoke a couple words to Jason & her mother. Her breathing became less labored. In the early hours of Tuesday morning, her vision began to return & as the day progressed, she seemed to improve. Her breathing was normal, she regained the use of her hands & could speak in full sentences.

Over the next 3 days, Rachael remained stable & on Wednesday, May 1st, she was moved from ICU. Her condition remained the same with no further improvement & still no diagnosis. The different teams of doctors worked tirelessly to figure out what was causing this. Many commented that they were losing sleep over her condition. And we remained fearful that she may relapse into “another Monday night” as we called it. They sent her labs to the Mayo Clinic & continued to rerun tests that had already come back negative. They were truly stumped. Her symptoms just didn’t fit into one box. 

On Thursday, the 2nd, the teams of doctors agreed that neurology should now take the lead on her case & she was moved to the neurological unit. Her condition was clearly attacking her central nervous system. They still suspected lymphoma but also began exploring different auto immune diseases. And they still weren’t able to completely rule out viral meningitis. In nearly a week, it felt like we hadn’t gotten any closer to a cause & Thursday evening she lost her vision again, only partially this time, but her speech also became slurred a bit. The fear of repeating Monday night was overwhelming, but luckily she stabilized & fell asleep. Neurologists decided that a brain biopsy was the next most likely step towards a diagnosis & that would require another MRI. It was tentatively scheduled for Monday. 

Finally, late on Friday night, we got some answers. The Mayo Clinic results showed a positive hit for the MOG antibody. Rachael has a newly identified immune disorder, that until recent years, had been treated as MS. Her body has created antibodies that attack the MOG proteins within her myelin sheaths. We were elated to finally put a name to what was causing her deterioration, & more importantly, now they knew how to treat her. They immediately began to administer steroids along with an IVIG treatment. Steroids are the primary course of treatment & that explains why she responded so quickly Monday night. We were relieved she would not need a biopsy. 

As I write this now, 10 days after she was admitted to the hospital, we are unsure if she will have any long term effects or disabilities. She is slowly improving each day, but faces a long road to recovery. Once her condition is controlled, she will be transferred to a rehabilitation facility where she will likely spend 2-3 weeks rebuilding her strength & motor skills. 

We remain hopeful for a full recovery but we know the hospital bill is growing. Jason has been a rock for her throughout this terrifying ordeal, having barely left her side. They have been surrounded by the tremendous support of family & friends. We now hope to alleviate a bit of their stress by helping with medical costs. If you can help Rachael & Jason, we sincerely thank you. If you are unable to help with a donation, we understand & we continue to be grateful for your thoughts, prayers & support. We also hope that by sharing Rachael’s story, it may lead to a quicker diagnosis for someone else. 

Thank you!
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Organizer and beneficiary

Jenn Cap Loftus 
Organizer
Omaha, NE
Jason Tordoff 
Beneficiary
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