Here is what we found out today:
1.) Sarah's neurologist is pretty sure Sarah has NMO. She is going to treat Sarah as an NMO patient because her symptoms are in line with NMO (repeated bouts of Optic Neuritis) and because the lesions on her brain are more in line with NMO than with MS. (But she is not completely ruling MS out because it runs in our family.)
2.) Sarah will still need to have a blood test done in a couple of months to determine if NMO antibodies are present in her blood. Not only will a positive result indicate NMO, but it will rule out MS. A negative result will not rule out NMO though, because 30% of people with NMO do not test positive for the antibody.
3.) Sarah's MRI came back great. No new lesions. No active lesions. No lesions on her spine. Her neurologist explained that Sarah will know right away if she develops lesions on her spine because unlike the brain, which can "hide" lesions and where there will be no symptoms associated with those lesions, the spinal cord does not have the ability to hide lesions. Lesions on the spine will correlate directly with a physical disability in Sarah's body whether that is the loss of use in her arms or legs, etc...
4.) Sarah is now on a drug called Imuran. She will be on this drug for the foreseeable future. This drug greatly reduces (but does not eliminate altogether) relapses. This drug is the least risky of the three types of drugs in the drug class used to treat NMO. Sarah will have frequent blood tests to make sure that her liver is functioning properly as liver damage is one of the risky side effects of a drug of this kind. (Unlike the Avonex, my body is not telling me not to put her on this drug. I don't have the gut reaction to this like I had to putting her on Interferon treatment. I don't like doing it, but I understand that this is part of what happens when you are dealing with as serious an illness as NMO.)
5.) Sarah is B12 deficient (which surprised me as she is the second biggest meat eater in our family behind Bob) and will need to be placed on a B12 supplement and have regular blood tests to monitor her B12 levels.
6.) Sarah is having issues with an increased frequency of nighttime restroom breaks which could either be a side effect of coming off of her steroids or could be a sign of her having developed diabetes because she has been on steroids for so long. She will need to have a urine test if she continues to wake up over the next 3-4 days.
7.) Sarah's ribs have been bothering her lately which could have something to do with her NMO. Her neurologist asked us to keep an eye on that for the next month, and to contact her if the pain continues. For now, we have switched Sarah's mattress to see if it is something not related to the NMO.
I really, really like Sarah's new neurologist. She believes whole heartedly in the power of diet and its abilities to heal people. She is a big believer in exercise (especially yoga). She supports and has patients who seek out and use Eastern medicine ideas/practices. She believes in the healing power of acupuncture, and sees benefits in us trying that for Sarah (if we can find some place that will take a person her age). She gave us a great list of foods to eat /not to eat, and I will share that with you another time. She also advised us to seek out a nutritionist if we needed help with dietary changes.
She agreed with me that MS would be a "lighter sentence" than NMO, but was able to tell us about 2 of her patients who were diagnosed with NMO early on (ages 9 and 11) and are now in their early 20's. One of the patients, a girl, had a case of Optic Neuritis just like Sarah's. She just graduated from college, and lives a pretty normal life. She cannot drive because, just like Sarah, her vision has been compromised too much, but I was grateful for the stories of hope. I read on a website (here) that 32% of NMO patients die within 5 years of diagnosis (mostly) due to respiratory failure, pulmonary embolism, or urosepsis. I have been carrying that statistic around in my heart for the last week or so, and the weight of that knowledge was dragging me down in ways I cannot even explain. I know that, in reality, we all can die at any time, but the chances are pretty small that that will actually happen. To have a statistic like that staring at me was really hard for me to deal with for a while. (Granted, as my sister sternly told me, there is no way of knowing what type of lifestyle these people lead, how old they were etc...there are so many other factors that could have attributed to their death). To hear stories of people not only surviving this disease, but thriving was much needed.
Right now, I am feeling pretty numb about the whole diagnosis. Honestly, I think that is very much a good thing. In the days that come I am sure all of this information will seep into my being, and I will start to actually process it all.
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