MANY steps back...

This morning we recieved a very sobbering phone call. When Aaron was first diagnosed they mentioned that his blood work showed that he tested positive for antibody in his blood that is an indicator of an another disease that is similar to MS called Neuromyelitis Optica which  presents it self almost in the same way. The doctor was pretty positive Aaron did not have this, but felt like he better retest Aaron for it since it did come up positive in his blood work.

What is NMO, Nueromyelitis Optica vs. MS?

Neuromyelitis optica (NMO), also called Devic's disease, resembles multiple sclerosis in many ways. It was first identified in 1894 and characterized by its tendency to selectively and severely affect the optic nerve and spinal cord. But for about 100 years, NMO could not be distinguished from multiple sclerosis. Research conducted over the past 10 years — much of it at Mayo Clinic — shows that NMO and multiple sclerosis are distinct illnesses that take different courses and need different treatments. Because of this, researchers have found ways to differentiate between these diseases and more quickly diagnose NMO. Both diseases affect the central nervous system. In NMO and multiple sclerosis, the immune system reacts against the body in what are often termed episodes or attacks. These episodes cause inflammation and destruction of cells. In NMO, the primary targets are optic nerves and the spinal cord. The optic nerves and spinal cord are also commonly affected in multiple sclerosis. Those are the similarities. But there are also a number of differences. Patients with NMO often have severe, rapidly worsening symptoms. When the optic nerves are affected, blindness can occur. Likewise, when spinal cord cells are damaged in NMO, patients may experience paralysis, loss of bladder and bowel control and, occasionally, breathing difficulties that can prove to be fatal. Patients with NMO may also have episodes of vomiting lasting for up to a month — not a symptom of multiple sclerosis. In multiple sclerosis, initial episodes usually are mild and not life threatening. Over time, patients with multiple sclerosis may develop disabilities including paralysis (most typically in the legs), but permanent disability often tends to develop gradually and not as a result of sudden attacks as it does in NMO. We've learned that patients with NMO usually have normal MRI brain scans early in the course of the disease, while the brain scans of patients with multiple sclerosis may show abnormalities. About 80 percent of patients with NMO have distinct, long lesions in the spinal cord on MRI that aren't present in patients with multiple sclerosis. In the most significant discoveries so far, Mayo Clinic researchers have identified both a unique antibody associated with NMO and the target cell that the antibody destroys. Antibodies, activated by the body's immune system, are typically used to fight off infections. The antibody, called NMO-immunoglobulin G (NMO-IgG), is present in 70 percent of patients with NMO. Patients with multiple sclerosis do not have NMO-IgG. With these findings, researchers developed a blood test that greatly aids in accurate, rapid diagnosis of NMO, which is critical for improved outcomes.

We got the blood work and new MRI's done a few weeks ago, but hadn't heard mush since. The blood work takes awhile, but we kind of assumed he was fine since we hadn't heard anything yet. We also felt pretty positive all was well with Aaron and that life was finally getting back to a new normal for us. That is until Monday Aaron began to have some numbness and pain on his left side again. We assumed it was another MS flare up and reported it to the doctor's office. Tuesday they called back but we missed the call and didn't get back until they were closed. They called again while Aaron was in meetings on Wednesday night and this time left an urgent message that he needed to get back to them. This morning Sally our MS specialists PA called. She explained to Aaron that he indeed did test positive again for Neuromyelitis optica, and that his spinal cord had a lision you usually only see with NMO and that we needed to get into see the doctor ASAP. She mentioned that they are very confused about what is going on. Because as you can read above he has symptoms and problems with both diseases.

Perplexed and unsure we all are now. They hope to get Aaron into the doctors soon to get him some more infusions to take care of the numbness in his left side, but we are unsure how soon until we can get back in to see the specialist. The scary part is that this means the medication he is on is probably not working and that he is just sitting and waiting once again. We really don't know anything now and feel very lost.

We hope this helps people kind of know where we are at right now. It also shows what our hopes are in getting in to see the Doctor ASAP, getting the numbness away and hope we can nail down what is really going on. Again, the biggest way to help right now is to just keep Aaron in your prayers. We will try to keep everyone posted as we learn more.