Choose Your Language:
Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
Until my early 30’s I was an active young woman, healthy, exercised regularly, independent, worked full time and loved to travel. I bought a three level townhome, had my own car, loved and looked forward to my girl trips and getaways. I also enjoyed traveling for work to and from the West Coast.
Symptoms: Started around when I was 34 years old. I experienced periods of numbness, tingling in my toes, feet and calves, making periods of standing and walking challenging and awkward. Periods of pain and discomfort continued to slowly increase and I was also experiencing dizziness and extreme fatigue.
I had periodic visits to the ER, with a blood test confirming I was not pregnant. X-rays of lower extremities were conducted, I was prescribed Motrin and was advised to stretch regularly. At the end of 2007 and after many visits to ER with no new changes or diagnosis, I was referred to neurology. The soonest new neurology patient appointment available was at least 6-8 months and I took the first appointment with the first neurologist that could see me the soonest.
Symptoms: weakness in legs, walking balance issues, numbness and tingling in toes, feet and calves. Intensity of symptoms continued and became always present. I was diagnosed with transverse myelitis (TM).
Testing/Imaging: lumbar puncture, MRI of cervical, thoracic spine and brain with and without contrast
Treatment: Periodic 4mg Medrol Dosepak for 21 days, starting with several pills first day and tapering down daily until completed. I took this Medrol Dosepak treatments frequently, several times yearly.
Symptoms: Previous TM symptoms continued, but at this point, it present all the time, including numbness and tingling in fingers, hands and forearms. Experienced “MS Hug”, periods of vertigo while sitting, standing and walking.
Treatments: Gilenya (fingolimod) 0.5mg capsules daily
Imaging: Quarterly MRIs with and without contrast cervical, thoracic spine and brain. Results showed white matter along spine and on brain.
Treatments: Radiation daily for 20 days
Procedure: partial lumpectomy surgery
Treatments:
Procedure: Bilateral mastectomy surgery with reconstructive breast surgery
Symptoms: Numbness, tingling in all toes, both feet, both legs through groin to hips, balance issues, difficulty walking and standing, vertigo, MS Hug, numbness and tingling in all fingers and both hands, weakness in both legs and arms, confusion, tiredness.
Hospitalization: 10 weeks. Bedridden, periodic moments of semiconscious state during first week of hospitalization, Foley catheter to help drain urine from bladder, paralyzed from mid chest to both legs and toes. Could not speak, read, write, difficulty using both arms and hands due to weakness. Difficulty feeding myself due to lack of strength in my arms and hands.
Imaging: MRIs with and without contrast, thoracic, cervical and brain, blood test confirming AQP4+
Treatments: physical therapy (PT) and occupational therapy (OT), speech therapy. Two plasmaphereses treatments (each 5-day treatment cycle). 2 Rituximab treatments (allergic reaction to both treatments), Solu-Medrol (IV steroids to reduce inflammation), gabapentin (pain), baclofen (pain), carbamezepine (tonic spasms), trazadon (sleep).
Testing: Swallow test and ultrasound to ensure I could swallow without choking
Home to a hospital bed and wheelchair. Continued in home PT learning how to transition to and from bed to wheelchair and to and from wheelchair to walker. Returned to outpatient PT, OT and speech therapies for 2 years. Transition to and from use of walker, quad cane and single foot cane. Now living independently. My mother is my care taker, she checks on me daily, drives me to all medical appointments, takes me grocery shopping and helps me with things around the house, i.e., laundry, house cleaning, etc. I no longer drive.
Treatment: IV infusion treatment every 2 weeks at cancer infusion center at the same center where I received my chemo treatments for breast cancer
Treatments: IV Infusions every 8 weeks
Throughout my journey with NMOSD, I’ve navigated profound changes medically, physically and emotionally. Along the way, I’ve become my own strongest advocate and have had the honor of connecting with incredible, compassionate individuals from dedicated physicians and supportive group members to new friends and family. I’ve learned sometimes it’s okay to not be okay and take my “moment”. I take the moment, then put on my big girl panties and then look forward to tomorrow. Always look forward to tomorrow.
