Article Two in a Three Part Series on NMO/Devic’s Syndrome
By Tanya Hudson
Since my friend’s diagnosis of Neuromyelitis Optica in January of 2012 we have been doing our best to learn as much as possible and help in educating others about her disease. One of the biggest challenges sufferers of Devic’s Syndrome face is how often their condition is misdiagnosed as Multiple Sclerosis. NMO and MS have many overlapping symptoms, and with the lack of information and research on NMO, it is easy to misdiagnose.
NMO is characterized by a sudden onset of varying degrees of eye pain and vision loss (optic neuritis) as well as inflammation and lesions on the spinal chord. There will also usually be limb weakness, numbness, or partial paralysis (transverse myelitis) as well as pain or tingling, loss of bladder and bowel function, nausea, and even prolonged bouts of hiccups.
The symptoms of MS usually come on gradually over time and include fatigue, numbness, bowel and bladder dysfunction, pain, tingling, numbness, depression and walking, balance, and coordination issues. MS is also strongly characterized by lesions, although the size and location tend to differ from NMO.
With so much in common it is easy to see how the two can be so easily confused, but a proper diagnosis is crucial. For one thing, the treatments are completely different, and treating one as the other can actually be detrimental to the patient. MS is typically treated with interferon beta medications while NMO patients usually respond to immunosuppressive therapy. The frightening thing about confusing the two is that some MS treatments can actually make NMO symptoms worse.
This is why a proper diagnosis as early as possible makes such a difference on how harshly NMO will affect a patient. The NMO IgG antibody test is a critical step to tell the difference between the two, although with a 5-10% chance of a false positive and 20-30% chance of a false negative, further testing must be conducted.
The confusion between the two diseases poses particular trouble for those facing NMO in that many doctor’s are not familiar with Devic’s Syndrome and patients often have to struggle with them in order to gain a proper diagnosis. I have personally been told stories of people being misdiagnosed with MS for years before NMO was finally discovered.
In the case of my friend, it didn’t seem to matter how much information she gave her primary care physician or how many times she reminded him of what she was facing, he continued to have her condition listed in her file as MS. This was very concerning when she would see him for any general problems; her disease and the fact that she is on immunosuppresive therapy changes the course of how even common illnesses should be treated for her. She of course has specialists who are familiar with and properly treat the Devic’s Syndrome, and needless to say, she has recently found another primary doctor who will listen to the differences between her disease and MS and treat her accordingly.
Struggles with physicians compound with battling insurance companies for approval of treatments. As I said in the first article, there are no FDA approved medications for NMO, and many patients face horrible waits as they fight for approval of “off label” treatment. The sudden and rapid nature of this horrible disease, especially the vision loss and paralysis, make this a very scary process for many patients.
Again, the key is awareness. The more knowledge there is about Neuromyelitis Optica, the more likely patients will be treated properly, and the more likely we are to find a cure. There are wonderful organizations out there who are doing just that to fight to give NMO patients a voice such as The Guthy-Jackson Charitable Foundation. My next article in this series will be dedicated to them and the hard work they are doing to find a cure.