My NMO experience is minimal as I was just diagnosed on June 22, 2010.
I was originally diagnosed with Multiple Sclerosis (MS) on October 29, 2009. I started Copaxone on November 7, 2009 to help slow the progression of MS.
I’ve been having vision issues for about two years now and it’s progressively getting worse. I have blurry vision in both eyes that is off and on all day, I also have occasional double vision and I have lost my peripheral in both eyes on two seperate occasions. I voiced these concerns at a routine appointment in my neuro’s office where a second Brain MRI was suggested.
For two weeks I waited for her (a NP in my neuros office) to put in my referral for an MRI. My patients ran dry and I ended up going to the hospital ER and getting the MRI done myself. Two doctor’s from the neurology team at the hospital asked me why I thought I had MS? I told them, “”because an MS Specialist diagnosed me and I’ve been on Copaxone since November. Why wouldn’t I think I have MS?”” This, understandably, put a lot of questions in my head.
A week later I saw the NP in my neuro’s office to go over the results. I mentioned that I am now questioning my diagnosis and I would like an appointment with me neuro ASAP! I got an appointment less than a week later. (Let me just say, my current neuro is THE BEST (in my area at least), but he’s not the neuro who diagnosed me. I was seeing another MS Specialist within the practice but he left shortly after my diagnosis to volunteer overseas.) Once I got in the room with my neuro, he immediately pulled up my spinal MRI from October 16, 2009. My previous neuro had said that the lesion on my spine was a typical MS lesion. But as it turns out, that’s not right at all.
The lesion on my spine is in my spinal cord, it is also “”long and stringy”” according to my neuro and spans the length of 6-7 vetebrae. How the heck my diagnosing neuro could think that was a typical MS lesion is beyond me. Even I know it’s not typical for MS. He then told me that the lesions in my brain, I have 2-3, are not typical of MS either.
Back in November 2009 I had the blood test for the NMO IgG antibody which came back negative. My neuro said that I am extra, extra special in the sense that A. I have NMO. B. I tested negative for the antibody and C. I show little debilitation (if any) caused by the lesion in my spine. My eyes are in tip-top shape too according to a Neuro Opthamologist.
I have received a referral to the Mayo Clinic in Arizona and I have also had my neurologist write a letter to my insurance company to further push them to approve my visit, 100%, to the Mayo Clinic. My neuro is very supportive with the fact that I want to visit the Mayo Clinic, whom I feel to be the leading force in NMO research, and getting a confirmation that I do indeed have NMO.
And just for fun, below is a list of symptoms I have experienced over the years…
Numbness in Arm and Hand
Trouble Sleeping (has improved)
Pins and Needles feeling on Hands and Feet
Complete Loss of Peripheral Vision
Pain in Legs, Back, Neck, Back of Head, Arms, Hands and Fingers
Constant Ringing/Buzzing sound in Ears (Tinnitus. But I still have Super hearing
Floaters Dizziness/Lightheaded usually when Standing Tunnel Vision Memory Loss 🙂
What was I talking about? =) Just kidding.