So as I mentioned in my last post, my diagnosis was recently amended from MS to NMO. (Neuromyelitis Optica) In many ways, I feel like I’m right back at the beginning. A whole new diagnosis means a whole host of new things I need to learn.
I need to be a quick study about NMO because it’s rare and medical practitioners know even less about it than they know about MS. I’ve given my GP an NMO guidebook so she can study up. I may very well be the only NMO patient she ever has. As it is, she only had two MS patients in her busy practice and I was one of them. Fortunately, she has always been extremely receptive to any information I could give her about MS and is equally so about NMO. She may not know a whole lot about either disease, but she is willing to learn and to work with me as a partner in my care. I am incredibly grateful for that.
Now that it’s been determined that I have NMO, I have had to switch both neurologists and clinics in order to receive optimal care for my disease. No matter how well meaning this decision was, it’s been hard. I feel vulnerable. Over the last five years, I’ve built a very good relationship with my neurologist. What I loved best about her was that we really connected and she always saw me not just as a patient, but as a person. I wasn’t merely a problem to fix, a disease, diagnosis or a set of symptoms. This is incredibly important to me, because I am so much more than that. I will really miss her.
I also have no idea how the new clinic works. It took a couple phone calls before I got one of the nurses who works there. I explained to her I was the “new kid on the block” and asked her to give me the run down. I still have lots of questions, but I will likely have to figure things out as I go along.
I’ve discovered that arranging for IV steroid treatments is a major undertaking. I am used to getting treatment through my former clinic which was reasonably close to home. The NMO clinic is an hour and a half away (3 hours round trip) so having to trek that far three days in a row for treatment is a pretty big deal. (It has to do with the red tape around admitting privileges-I can’t just go to the hospital I live closest to, which is a 5 minute drive away.) Fortunately, there is a hospital on the other side of town, about 45 minutes by bus that has been able to accommodate me.
All in all, I feel kind of lost and off kilter, just like I did when I was first diagnosed with MS. I am trying to remind myself that I managed to get through that major adjustment period and be okay. It’s just going to take time to feel like I’ve got a handle on things again and I need to try and be patient and not get too stressed out about it. I’m making a point of reminding myself about what helped me cope the last time I went through this and then trying to implement some of those things this time. The biggest thing that helped me cope was being able to talk about it. Luckily, thanks to MS, I already have an amazing support group to lean on.
Tags: clinics, NMO, support groups