MS Misdiagnosis to Correct Diagnosis

I was diagnosed with MS in May of 2024. I lost my vision in my right eye. I had been having horrible pain in my neck and legs really bad. The heating pads, Tylenol, Ibuprofen, and all over-the-counter meds did not help. My fingers and toes were always tingling and burning. I went to the Dr. and they sent me straight to the hospital.

My misdiagnosis journey

I had 2 spinal taps before they finally misdiagnosed me with MS. They placed me on Kesimpta injections for MS in September 2024 - August 2025. Fast forward to 2025, and  I started having pain in my neck and arms again. I had 2 MRIs done, one in May and one in July; new lesions appeared on the spine and brain. The Kesimpta Injections were supposed to stop any new lesions and inflammations, but due to this not being MS, the injections did not work.

Further tests

My neurologist sent me for the 1st MRI. In May, I had taken the MRI disc to her office, but apparently, she never received it. I had an appointment with my Oncologist in July, and she sent me for another MRI after looking at my neck and me complaining about pain again. When my Oncologist received the images, it was alarming, and she called me and reached out to my Neurologist. The neurologist called and sent me back to the hospital immediately. I arrived to hospital and was told by doctors that had I not come in I would not be here today.

Finally, the correct diagnosis

This hospital stay lasted 10 days, consisting of tests, steroids, and plasma exchanges. This time I was diagnosed MO and NMO. The doctors stated that it mimics MS. During the stay, my back started hurting, my teeth were hurting, my hands were swelling, tingling, and burning. The pain was just unbearable. I now have to take Infusions, PT, OT, and ST. I still have good days and bad days. I pray that the doctors are right about the diagnosis this time, and we can get this under control. Cold showers do help.