When life hands you NMO.

I was a merchandiser for a greeting card company. I had just been given some new accounts and a good raise. Not long after starting my new accounts, I had a bad bout of bronchitis that would not let go. It hung on for months.

Not long after it started going away, a horrendous fatigue set in. It kept getting worse and worse. Then tingling, needles and numbness started in my feet and legs. I literally had to crawl off the job one day. I left ,y one account. Left everything on the aisle and slowly made my way out of the store hanging on to a basket to help me out. I had to keep stopping. I swear I thought I was dying! When I got to my vehicle, I had trouble getting in. I had to lay across the seats and rest for a long time before I could sit up and drive home.

Thwt night my husband took me to urgent care thinking it must still be the bronchitis. All tests came back ok and I was sent home.

i mad an appt with my primary Dr. She sent me for an MRI thinking perhaps it was MS. She als sent me to a Neuro. He saw a spot on my brain but said it wasn’t an MS lesion so to go home and get on with my life. It must be stress or maybe I was getting near menopause.

I was livid! I asked for a 2nd opinion. My mistake was staying in the same medical group to get it. Of course the result was the same. And now I know that an MarImwas only done on my brain and not should have been done of my spine as well.

In the mean time my primary Dr kept running tests and tryI get to find out what was wrong. She exhausted all she could think of and said it was probably CFS, chronic fatigue syndrome.

I went on to have hiccups, severe vertigo, nausea, a gray spot over the center vision of my left eye, which was deemed Optic migraines.

I ended up in a wheelchair from leg weakness and debilitating fatigue. I was bedridden the majority of’2005. I had an EMG nerve test and it showed weakness with no cause. No dr I saw could find a reason why I was getting sicker. Most thought I was faking it to get out of going to work. I couldn’t keep my job because of the fatigue and pain and weakness in my feet and legs.

Fast forward to July of 2013. I was watching T.V one morning and I had a gray area over my left eye. I thought my glasses were dirty! Ha! So I cleaned my glasses and it didn’t help. In fact, the area of grayness kept growing! I realized I was losing my sight! I called my dr, went in and they thought perhaps a detached retina. They sent me to an ophthalmologist who said she thought it was Optic Neuritis and I may have MS. She sent me to a Neuro-Ophthalmologist who said she thought it was an Optic nerve stroke! What???

i had such eyenpain and vision loss. I was never given IV Solumedrol. I kept telling the ophthalmologist that the pain was not going away in my eye and my sight was getting worse but she said I shouldn’t be having those symptoms any longer.

I finally insisted she do some tests or something! She sent me to a new Neuro-Ophthalmologist and he looked behind my eyes, ran blood work and called me 3 weeks later, on a Sunday, while I was in church. By now it had been over a yr since I had my ON attack. He started me on IV Solumedrol but by now the damage had bee n done.

It was now 2014. My 1st attack was in 2005.

I tried Imuran, CellCept and Methotrexate but had sever side effects. I started Rituxan in 2016.

I can walk with a cane I nside my house but when I am in public, it’s too much walking so I’m n a wheelchair. I still have sight loss on both eyes, but I can see good enough. I have damage in both feet and legs and left arm plus the cognitive issues are worsening. And the fatigue is debilitating.

But I am so very blessed! I have the most supportive husband, son and daughter in law! Since it took so long to get diagnosed, I am beyond blessed that I am even alive!

Ive learned that I am pretty tough and that I have to be my own advocate and not to give up or take no for an answer. NMO is the name of my disease, but my name is Donna.

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