Lillian’s NMO Story – Living For Her Family

She thought she had a bad sunburn…

Lillian had gone camping with her daughter and her Girl Scout troop in September of 2015.  When she returned home, her shoulders and arms burned, but strangely, had not changed color.  The burning sensation lasted for months.  Lillian was in severe pain, and felt as if her body was on fire when touched.  But since no burn or rash was visible, her doctor sent her home, again and again.  On Lillian’s insistence, the doctor finally prescribed medications for some possible causes — shingles and Lyme disease — and sent her home again with steroid cream, for what she insisted could just be a skin infection.

The burning sensation continued for months, and so Lillian decided to try acupuncture to help deal with the pain.  Acupuncture helped somewhat, but soon she started to notice numbness in her arms.  Over time, the numbness and tingling traveled all the way from her shoulders to her fingertips.  She couldn’t feel her arms or fingers anymore.  It got to the point where Lillian couldn’t hold or use a pencil or a fork.  Her primary care doctor theorized a pinched nerve and sent Lillian home again.  Lillian decided to consult with a neurologist who tested the nerves in her right arm, found nothing, and suggested that Lillian was imagining her symptoms.  Upon her insistence, he ordered an MRI, but suggested that it might not show anything.  Though her doctors dismissed her complaints, Lillian knew something was wrong.  In addition to the pain, Lillian experienced extreme stiffness in her neck.  She had so much discomfort that she was barely sleeping.  Most nights, she would wrap ice packs against her arms and shoulders just to numb the pain so she could sleep.  She also started to have a hard time moving her neck at all.  Then, one morning, she lost strength in her legs, and fell over.  She assumed she was just exhausted from a long weekend, and stayed bedridden for four days.  She scheduled the MRI, and promised the neurologist that if nothing were found, as he thought, he could say, “I told you so.”

Instead, the MRI showed what seemed to be an alarming tumor pressed up against Lillian’s spinal cord.  The technician was so unnerved by what he saw that he pulled her out of the MRI machine and sent her directly to the Emergency Room, where they administered intravenous steroids.  The ER doctor misread her MRI images and instead of seeing a lesion inside her spinal cord, he assumed that it was a mass on her spinal cord and said she would be fine to go home.

When Lillian woke up the next morning, she couldn’t feel anything on the right side of her body.  She returned to the Emergency Room, and this time was immediately admitted to the ICU.  She was kept in the hospital for two weeks where they performed spinal taps and numerous blood tests daily.  At this point the doctors thought Lillian might have MS, but the tests showed otherwise.  So the doctors returned to the tumor diagnosis, and told her they suspected cancer.  They wanted to biopsy the tumor, but warned that she could end up paralyzed from the intervention.  The attending neurosurgeon informed her that, in 25 years at the hospital, he had never seen anything like what she presented.

Lillian was alarmed at how little the neurologist and neurosurgeon knew of her condition.  They had no other diagnosis for her except that it could be a tumor, though they weren’t sure, and radiation and cutting into her spinal cord were their only options.  So Lillian went to another hospital for a second opinion, laden with her records.  After one hour in the Emergency Room, the doctor asked if she had ever heard of Neuromyelitis Optica.  The neurosurgeon there dismissed the idea of a tumor, and instead identified transverse myelitis – a long lesion in Lillian’s spinal cord.  She remained in the hospital until the end of December with more blood tests, awaiting a confirmation of NMO.  She got the official diagnosis of NMO and Sjogren’s Disease on January 4 of 2016.

Lillian was relieved to find out that it was not a tumor and that they would not have to cut into her spinal cord, maybe leaving her paralyzed from the neck down.  But at the same time, she had never met anyone with NMO, nor had she ever even heard of the condition.  She continued to endure pain and weakness in both legs, and numbness and tingling along the entire right side of her body.  With the diagnosis, Lillian was prescribed steroids and pain meds.  She started to get painful spasms along the right side of her body, during which her extremities seized up, crippling her for a minute or so with each one.   She soon learned that these convulsions were the painful tonic spasms that many patients with NMO deal with.  On New Years Eve, Lillian had so many spasms that she stopped counting after 75.  She was finally prescribed Gabapentin to help deal with the spasms and nerve pain.  Lillian now takes 3600mg a day to keep the spasms under control and make life manageable for her.

In the scheme of NMO, being diagnosed within four months of initial symptoms isn’t bad.  But Lillian’s’ symptoms were indeed bad, and for a couple of months, her physicians dismissed her complaints as figments of her own imagination.  Time after time, they sent her home without any answers.

When she was finally diagnosed correctly, Lillian was given plasmapheresis every week for six months, high dose steroids, painkillers and anti-spasm medications as needed.  She was also put on Rituximab.  Today, Lillian is pleased with only 3 or so daily spasms, and her nurse expects that number will continue to drop over time.  Simple living triggers these spasms – warm water hitting the back of her neck; bending her neck a certain way; running, skipping, and general exercise.

The spasms continue to limit Lillian’s life.  Without her medication, she can’t drive because her arms or legs might become incapacitated at any time.  She has collapsed in stores and in parks, and even in her driveway.  People mostly walk right by, unsure how they can help, or sometimes, just unaware.   Some show kindness.  In remembering the elderly couple who sat down next to her at the park and held her hands until a spasm passed, Lillian was reduced to tears.

Despite her condition, Lillian is a grateful woman.  She has a devoted husband who has been able to work from home, so that he can pick up any load.  And he does, willingly and without complaint.  She has three wonderful young children, who take care of her as well as they can, making sure she takes her medications and rests as needed.  It is these little ones who keep Lillian going.  Her favorite thing is to watch them play sports, and no matter how tired she might be, she insists on attending every soccer game and practice they have.  She feels normal when she sits on the sidelines with other parents, cheering on her kids and their teams.  Her children and husband are what motivate her to get up every day and continue to do what she does.

Lillian’s love for her family is palpable, and she credits them all with carrying her through the tough times.  She knows that, with the love and support of her husband and three children, her life is better than most.  She is grateful that NMO struck her and not her healthy kids, and she is at peace with her condition.

When Lillian was first diagnosed with a likely cancerous tumor, she thought she might die.  So she takes nothing for granted.  Every day, every step, every soccer goal and every hug remind her that she is indeed a fortunate woman.

As told to Gabriela Romanow, May 17, 2017