While we were visiting Ohio, Sarah had an MRI, an ophthalmology appointment, and an appointment with her neurologist at the Cleveland Clinic's Mellen Center. The results of everything was both positive and confusing. Her MRI came back as unremarkable which just means that everything looks as it should in an 11 year old little girl. No new lesions and no active lesions either. This is great news.
The confusing part - which left Bob and I with more questions than answers - is that Sarah is a more complicated medical case than we originally thought. Unbeknownst to us, Sarah's Cleveland Clinic neurologist presented her case to the top neurologists in the country that specialize in MS & NMO at an annual meeting. She also presented Sarah as a case study to general neurologists who do not specialize in those fields. Her doctor was trying to see if other doctors provide insight as to exactly what disease resides in her body since none of the doctors who have overseen her care to this point can nail anything down. Unfortunately, none of the doctors could agree on what could be the name of Sarah's illness. Some thought it was NMO. Others thought it was MS. And others still thought that she has a disease called CRION (Cronic Relapsing Inflammatory Optic Neuropathy). In fact, some doctors discussed the idea that Sarah could be the youngest patient in the nation with CRION.
I do not believe Sarah has CRION. CRION does not cause lesions on the brain. Sarah had them in both her initial MRI in 2013 and then a follow up MRI in 2014. I brought this fact up with her neurologist at the time of her appointment last week and her neurologist agreed with me, but stated that many of her current symptoms - mainly the blindness and quick pace in which she lost her vision - are CRION markers. I then asked her doctor if it is possible that Sarah has two autoimmune diseases. I know that this is the case for many many people who suffer from these sicknesses. Her doctor said that although nothing is impossible the likelihood that Sarah has two diseases is not very probable.
Which brings us back to the million dollar question: What disease does Sarah have?
I think that when we left our appointment we were all agreement that we no longer know what she has. MS & NMO are the main ideas, but until she comes out of remission and we can see the symptoms of a relapse we will not know. MS is back on the table because of Sarah's aversion to heat and the way that her body reacts to it. MS is also back on the table because of the physical exhaustion Sarah's body suffers. NMO does not usually present itself as being a disease that makes you feel whipped on a daily basis. NMO is still on the table because of the severity in which her vision was taken from her. It is also on the table because of the way that the disease seemed to thrive on steroids.
I asked to have a slew of blood tests done. Sarah was tested again for MS, NMO, and Lyme Disease. The NMO & Lyme came back negative, but NMO comes back negative for 30% of people who actually have the disease. We are still waiting for the results for the MS. (I didn't know until last week that MS could even be tested using a blood sample. I thought it could only be done using an MRI and a spinal tap.)
The black out that Sarah had a few weeks ago stumped both her neurologist and her ophthalmologist. If she continue to have those types of episodes her neurologist would like to treat her with a medication called Ritaxub. It is a type of chemotherapy that is a last line of defense against a disease such as Sarah's. For now though, we are just going to continue treating Sarah with her Imuran. Because her B12 came back low again she is also going to be back on 1000 mcg of B12. And believe it or not, she is deficient in Vitamin D and will therefore need to be put back on Vitamin D. She will no longer be on 50,000 iu's (yes, you read that right) as she was on when we lived in Ohio, but rather 2000 iu's.
I am grateful that we have everything squared away in terms of an action plan for her care. I felt for the past year like I was up a creek without a paddle because the medical care down in this part of the country is completely inadequate to handle a situation such as Sarah's. I feel like I can breath a little bit now that we have good doctors who are up to date on her situation, are willing to oversee her care from afar, and have agreed to write the orders for her monthly and quarterly blood tests that she needs as well as for her medication.
Sarah, as always, was a trooper throughout these appointments. Her MRI was 90 minutes and she handled it like a pro. I always tell the nurses prior to her having an MRI was a great job she does - they don't seem to fully believe me until Sarah is done. The staff that ran the MRI came out and told Bob and I that Sarah handled her MRI better than most adults. She really is an amazing little girl.
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