Neuromyelitis Optica

Within a day or two of sharing my Multiple Sclerosis diagnosis the MS specialist called and said he would like me to undergo further testing. He wanted me to have another blood test and a new lumbar puncture. After finally receiving all of my previous MRI scans he thought there was a possibility that I actually had Neuromyelitis Optica (NMO) and not MS.

I asked him if I could do the blood test first and if I tested negative for the NMO antibody could we then move on to the lumbar puncture; I still have bad memories from the first four LPs I had done. He acquiesced but as I had tested negative last year for the NMO antibody he warned me that I would likely end up having to go ahead with the lumbar puncture.

My blood traveled to the Mayo Clinic and the results traveled back - this time the test was positive. I have Neuromyelitis Optica. NMO is considered a rare disease. There are approximately 4,000 cases in the U.S. although the number is likely greater as it is sometimes misdiagnosed as Multiple Sclerosis. It used to be considered a severe form of MS but is now known to be it's own disease. The treatment is different as some MS medications can actually make NMO attacks worse.

A really simplistic way to describe NMO is that my body is attacking itself. It's battle plan is to specifically target my optic nerves, spinal cord, and sometimes my brain. In order to stave off these attacks doctors generally prescribe immune suppressing medications. The bad news is that NMO attacks are aggressive. The good news is, if treated during an attack, the damage may not be permanent.

There is no way to know when an NMO attack will happen. I'm going to try to live my life in such a way that I'm not always waiting for the other shoe to drop and hopefully I'll have some degree of success with that. I'll be following up with the specialist in the next few weeks to discuss treatment. For now I'm staying strong and learning what I can about my disease.

Pickin' Time.

Today is rather dreary. The sky is overcast and it's a little chilly out but my own feelings do not resemble the weather. Last night I stayed up into the wee hours watching Hocus Pocus and chatting with a dear friend. This morning we went out to brunch and I have hashbrown leftovers. It's hard to top potatoes in my world but my Uncle and I decided to go fruit picking. My dad's property has two varieties of cherry plums, two kinds of apples, pears, plums, blackberries, and raspberries. Today we just went after the cherry plums and some blackberries. Tomorrow we're going to find a ladder and get some of the amazing gravenstein apples and whatever we can reach of the regular sized plums.

I love fresh homegrown food and I'm so happy to have easy access to such a variety of fruit from trees that were planted long before I was ever born and haven't been tended in a good 15 years. Mother nature is pretty freaking cool.

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Welcome

I wanted to start a new blog as my old one belongs to a life that no longer exists. That's not to say my life is so very different than it was. In many ways it's still the same but so much has changed that I found it impossible to slip into my old world. That time has forever passed and a new life is before me. This new life possesses new struggles but I can't help but feel that it brings with it a richness that was lacking in the old.

Just over a year ago I became very ill and was hospitalized with lesions on my brain, optic nerves, and down my spinal cord. Eleven months later, upon a second attack, my old diagnosis was tossed out and I was diagnosed with Multiple Sclerosis. Last month I received a second opinion that confirmed this diagnosis. I struggle every day with symptoms but I try to focus on facing down what is before me and not worrying too much about things that may never come to pass. That's not to say I don't consider the future quite often and sometimes struggle to stay in the present but I don't see the point in borrowing too much trouble.

My goal for this new space isn't to write an MS blog although I'm sure that will figure prominently as I navigate my way through getting my illness stabilized. I intend to continue writing a lifestyle blog and I've decided a new life deserves a new space. Welcome to Tiger Bites.