I visited my regular neurologist this week, this being the first visit with him after my transverse myelitis diagnosis from the MS specialist. Unfortunately, the specialist had not yet sent my neurologist his notes from my visit, so the diagnosis was news to my neurologist. Not unexpected, but news nonetheless. He did not disagree with the diagnosis, and re-stated his thoughts that he believes that my symptoms were suggestive of early MS. However, he acknowledged that this could be something like MS, but not exactly MS. Good to know.
We had a good discussion about where things stood and what we needed to do. He agreed that it would be prudent to do the blood test to screen for neuromyelitis optica (NMO). This is where things got interesting. He knew about NMO and Devic’s Disease. However, he had to look up the name of the blood test that he needed to order to screen for NMO-IgG. His notes for the lab were “aquaporin-4 IgG” and “Devic’s Disease”. The nurse had to check his notes twice in order to get the right blood test ordered as well. Off I went to the lab.
There was a wait at the lab, as apparently everyone was getting tested for something that day. When my turn came up, I took the lab order to the technician. She stared at it. And stared at it. And then told me to wait a minute. And then called me back up and said she had no idea what that test was. That was not exactly…comforting. She wrote down some information and sent it to a consultant in another office of the lab. In order to figure out what the blood draw instructions were, and how the sample would be tested. Again, not exactly…comforting.
After a wait, she returned and said she had her instructions. The office she consulted with confirmed that the test could not be done on-site and had to be sent out of town. But at least we had the instructions for the blood draw and storing of the sample. She apologized and told me that she had never heard of that test and just wanted to make sure she had what she needed. My blood drawn, off my sample went to the refrigerator, where it eventually would be then sent out of town for further testing.
I have the utmost faith in my doctors, and I know that everyone I encounter has my good health at the heart of what they do. But this blood test experience has confirmed several things for me.
First, it is difficult for doctors (and lab technicians) to deal with “unique” medical issues. Apparently transverse myelitis fits into that category. It is not an everyday diagnosis, and I have to be patient with health care providers who are dealing with issues that are not common. My neurologist is “familiar”. But that does not mean that he deals with very many patients with transverse myelitis. There is a learning curve for both of us.
Second, this underscores my ongoing experience with patient advocacy. I am not pushy or overbearing in my appointments. But I educate myself. I research. I ask questions. I learn from others that I have connected with through this blog and on Twitter. I make a list of issues and questions, and I go into my appointments prepared. More and more prepared each visit, as it turns out. And I am not afraid to make sure I get valuable, quality time with my doctors to explore all of these questions and issues. My fear is that there are numerous patients who do not advocate for themselves in this manner, and–despite best efforts from their doctors–there are gaps in communication in that doctor/patient relationship. That is a dangerous thing for a diagnosis process. I am still working on thoughts on how to help improve patient education and advocacy in this area.
Third, I am the beneficiary of coverage under a very good health insurance policy. Really, really good insurance. I have lived life under high deductible plans, plans that require a limited universe of available in-network doctors, and plans that require my primary physician to make all necessary referrals before insurance would even consider getting involved. But I have good insurance right now, that, thus far, has had no issues with any of my visits, tests, or procedures. I cannot imagine having to go through this process being out-of-pocket for everything, or having severe limitations on my care options. Access to good health insurance cannot be taken for granted.
Dealing with a transverse myelitis patient may be rare for my normal health care providers. I have to be patient. I have to be prepared. And I have to understand that we are both probably going through a lot of the unknown together. Sure, it’s a little scary. But I’m learning how to tackle this adventure head on.
AnonMS Blogger 
How do you feel now that you know?
What a great question. I think the answer changes based on my mood. But overall, I would say “relieved”. I lost all expectations long ago that the answer would be “nothing”. So knowing what it is helps me understand how to put everything I am going through in context. I might also say “liberating”, which sounds odd, but feels true. At least most of the time.
You seem to have known something serious happened and it must be liberating to find out medically what it is…Prayers for your recovery.
You’re in a good position to cope well with this condition and seem to possess the critical thinking skills that are necessary to advocate for yourself while understanding that these are unchartered waters for most every healthcare provider that you’ll come in contact with. I’ve run across a LOT of people with TM who simply can’t wrap their brains around what has happened to their bodies and rely on their doctors to a very unhealthy degree.