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NMO Story: Living with NMO

I woke up one morning feeling as if the room was spinning. This originated in 2012. I went to the ER and was given a shot of steroid and benedryl and sent home. I was told it sounds very similar to vertigo. I felt like myself two days later.

In 2014 I woke up feeling like the whole world was leaning forward. I felt something was pulling me forward. I went back to the ER and given a shot of benedryl and steroid and sent home. I was told than that it sounds like Ménière’s Disease. The doctor that treated me in the ER, his wife had the same things going on and he said she to diagnosed with Ménière’s. I was told to also try OTC benedryl next time it happens, I will be fine with the benedryl and rest. Again two days later and I felt like myself.

After my youngest was born, January 22, 2015, it happened again. This time I had ringing in both ears, vision problems, balance problems and spearheaded problems. I tried OTC benedryl for two days along with rest and I felt worse. I thought it was due to having a baby recently, so I didn’t think too much of it at first.

I then saw my OBGYN about what I was feeling. She sent me to a neurologist. He ordered a brain scan and a lumbar puncture. The brain scan was the second one I had because I went to see the eye doctor and she ordered an MRI of the brain because she didn’t see anything even after dilating my eyes. She told me that the MRI would show more in depth. She told me she suspected Devic’s Disease and that she would refer me to an eye specialist as she didn’t know exactly what was wrong with me. I have a bright spot that won’t go away in the right eye.

I saw the specialist and he said that it definitely looks to be Devic’s Disease and that I need to communicate that to my doctors so they can look for it. My OBGYN also sent me to an ENT and I went and saw him. The ENT said it is not Ménière’s Disease as it would not effect my balance. This whole time, my primary care or OBGYN can’t figure it out. The first Neurologist couldn’t figure it out either. Then I was referred the Neurology team at KU hospital. I had the whole team stumped for the longest time. I was hospitalized twice during this whole process.

They ran every test I’m from A to Z blood wise, to come up with an answer. They tried to get me to do a brain biopsy but I said no. So they gave me a high dose Steroid via IV along with what seemed like 100 different medications. It was actually 10 different medications along with the high dose Steroids via IV. They released me a second time with the only answer beings chronic meningitis. They came up with this because there was inflammation in my meninges and lesions all over the covering of my brain and all down my spine. They were not typical MS lesions so they didn’t want to label it as MS.

In the midst of going to the doctor so often, the Neurologist finally said that they would label it MS because the lesions were too close to MS. Finally I told all the doctors I wanted the brain biopsy because I got real tired of living like this with no answers. Before all this happened, I had to find another PCP because the PCP at the time could not handle caring for me with no diagnosis. When I finally said yes to the brain biopsy, I had n appointment with yet another doctor who was a specalist in MS. I kept my appointment with her and she entered the room. Upon entering the room she looked at me and said, “you have NMO. It is like MS but it’s not MS. There is no need for the brain biopsy.”

I was relieved but at the same time I was worried. She also told me that there is no cure at this time and it is a rare disease and lifelong. She handed me a book and a pamphlet. She continues to care for me.

Both times I was having blood drawn everyday along with several lumbar punctures. After my first lumbar puncture, I had to return to the ER for a blood patch because the headache was so bad I could not do anything but lay down and sleep. I couldn’t even keep water down. So every lumbar puncture I had they had to do a blood patch right after to prevent the headache.

I was relieved to hear that the surgeon didn’t have to dig inside my brain to get an answer.

The MS specialist is the only one in Kansas and she is good. She has seen my type of lesions before and knew what they were. She still takes care of me. I still use my walker and cane and I am getting worse. They have ordered another MRI and blood tests to monitor the medications. I have bruises that pop up and don’t know where they come from. I fall all the time. I have already broke/fractured the third toe on my right foot.

Now they know what’s wrong with me, they can do what needs to be done and have better hands at it.

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