My story started after having a flu shot. I worked in the pharmacy for years so fyou got them so you wouldn’t get sick. I receieved my shot on Oct 1st , 2015. Week later I got sick with flu like symptoms, but flu test was negative. Within 4 days I felt better. I notice I was having burning pain in my back across my shoulder blades. I went to my PCP he thought I pull or tweeked a muscle . I was given 800 mg motrin. The pain stopped. The next week I notice right under my breast was hurting. I thought my bra had shrunk in the dryer and it felt really tight. In a couple of days it stopped. Then my eyes started hurting . I attribute it to I worked on computers and having to read alot at work. I went to get new glasses. My legs started tingling and my knees was so weak I couldn’t bend down to pick up anything off the floor. I went to my PCP. He diagnosed pinched nerve and gave me gabapentin. I then started having problems with my bladder and bowels. I woke up one morning and I had no sensation in my left leg. I went back to my PCP and he sent me to the hospital. I was lucky to have the medical care. After many test a neurologist talked to me about my history and after we talked he sent me down for MRI, CT scan and Lumbar puncture. He diagnosed me with transverse myelitis. They started me on steroids. After I got out the hospital I went
to a neurologist I took blood test and that is when I was diagnosed with NMOSD. I went plasma exchange for 3 months, and rituxan. I have relapsing NMO. All of my symptoms occurred from October 1, 2015 – December 30, 2015. Since my diagnoses I have had 3 relapses. I have my rituxumb every 6 months . I am now disabled and trying to live my best new normal.
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I am sorry to hear that. I too have been recently diagnosed with TM and NMO. Originally in june I’d started having the major headache to the left side of brain only.( to make a long story short) I was given gabapentin and told to see a neurologist. I then started to experience back off neck and shoulder pain. Neurologist did a MRI and MRA with and without contrast
I was diagnosed with TM. I’ve never heard of it before and did not no the severity of it. At the time I did not have Insurance but my insurance from my job would be available in 3 months. In the mean time, I’d started experiencing numbness and tingling in left hand only. Then it progresses to left leg and arm weakness. Finally numbness on the left side of the trunck ofy body. I went into the ER , they immediately started me on 5 doses of steroids, but to no avail. Then they started plasmapheresis, which I obtained results. I’m still partially paralyzed and have left sided weakness but I’m grateful that I’m able to walk. While in hospital they discovered I had NMO. As of right now I’m not on any immunosuppressants but they are trying to get me on Saloris or soliris asap. What can I expect in the interim? I have days when I feel much better then the next thing you know I feel weak as ever. Do u experience that as well. Please tell me what you go through on a day to day week to week basis. I need a support group
This condition is scary and I feel like I need to connect with people with like conditions.
Hi Nicole,
I trust that you have started the Soliris medication. It was September 25,2019 that this diagnosis of TM – NMO was placed on my health records, prior to that date I was very healthy active individual.
Nicole no two days are the same, be engaged and you will have more positive days especially if you count your blessings. Do a gratitude journey you will be amazed how it will make you feel. I love you listen to great music such as “It’s not an easy road” by Bob Marley I believe. Having conversations with people who love and care about you is very therapeutic.
My recommendation for anyone in this enchanted world is to stay positive, stay connected,ask questions, pray – prayer helps to heal, have faith, love yourself, exercise and even on your most challenging says stay focus and practice mindfulness. Continue to lend your voice to bring awareness of this rare disorder someone will be ever grateful you did. I did!