From MS to NMO – a mysterious journey

My name is Kimberly. I started this journey in the summer of 1996. Water from the sprinkler felt hot on my legs. It actually felt like it was burning. Then I noticed that my legs were numb so I went to the doctor. The first doctor I saw asked me a bunch of questions….anything bad going on, bills to pay, stress. I said yes, so he said I was just a nervous type (so not true) and that I was hyperventilating and that would make my limbs feel numb. I went back to work and stewed over that. He made me mad, so I made another appt. with another doctor. The second doctor did the feel test; cotton balls, sharp object. I couldn’t feel anything, so he scheduled and MRI. He suggested that it was either a tumor or MS and that the MRI would tell us for sure. I had an 18″ lesion on my spine. We started steroids which made things better, and I was sent to a neurologist.

After seeing the neurologist, and being diagnosed with MS, I started Avonex. In early 1997, I fell down, but got back up and seemed to be ok, Then I lost bladder function, so went to my neurologist, and noticed some shaking, he sent me to ER, by the time I got there, I could not walk. Was paralyzed, and spent a week or two there, then several months in a nursing home/rehab center. Got to go home in late summer of ’97, but was then sent to a home care facility because I could not take care of myself.

I spent 3 years in the home care facility, and steadily got feeling back. When I could stand and pivot into a wheelchair, I was given permission to move into an apartment by myself. All this while I was on Beta Seron, and it seemed to be helping. I continued the Beta Seron for several years, and continued to improve. Was soon using a walker, then graduated to a cane. Felt really good. I even got to the point where in the house I wasn’t using anything at all to walk. Had been in remission for so long that I decided (with my docs approval) to stop the Beta Seron, and had been off of it for at least 5 years.

In 2012 (February) I lost my mother, thought I was doing ok, but then in June I noticed I was getting weak in my right leg, and was back to using my walker all the time. Ended up falling and in the ER, was paralyzed again, so they sent me to Nursing home/rehab. Spent 6 weeks there in rehab and was able to go home, but fell again, and spent another few weeks back at same facility with more rehab. Have been home for over a year, on Celcept, in wheelchair, but walking a little with walker. It’s been quite the journey, and waiting to see what happens next. Hoping the strength continues to return.

Thank you for listening,

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