Back To Square One

Written by on February 12th, 2013 – 3 Comments

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.


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3 Responses

  1. Richard Tilden says:

    The St Mike MS Clinic arranges for steroid IV treatment at home. It can be arranged very quickly. It was done thru ParaMed. The same should be able to be done with the NMO clinic.

  2. Flyderaght says:

    I had my diagnosis earlier this year. I actually had to go to my optician who when I told him I was being investigated for MS tested me because I have had one over riding issue-my visual contrasts are terrible and I have been telling the MS clinic and the same opticians office for a few years that it was an issue. Finally, someone listened! The MS clinic here in Ottawa was quite familiar with NMO and tested me for it and it came back negative both times. The sad part is the last time I saw the MS clinic, it was suggested my prescription was at fault and this was the head guy to boot saying this! They had even tested me 2 years ago with some visual testing that there was an abnormal reading. A referral from the optician to the eye institute found very quickly that my optical nerves were about half the size for someone of my age. What I cannot fathom is how a clinic which is right at the top when it comes to MS research could have missed the fact that the NMO test is only accurate 72% of the time. Guess where I fit. All they can do is shut my immune system down to prevent another attack. I am sorry if it appears I am ranting, but I am cheesed that it is possible treatment could have been started 2 years ago.

    • Lelainia says:

      I totally hear you! It’s frustrating to be misdiagnosed. The difficulty lies in that if doctors are not NMO experts, then they rely too heavily on the NMO test results (which are far from foolproof, except in the instance of a positive result) instead of looking at the whole clinical picture and diagnosing from there. From what I’ve seen, those of us who test false negative have been through similar things. TWO doctors totally missed that I was having optic neuritis attacks FOUR times, even though at the time I was diagnosed with MS and they knew optic neuritis was something that was possible. I was treated for a sinus infection (which I did not have) and tested for diabetes, which I also did not have. It all boils down to education and awareness.

      I really do understand how frustrating it is to have the wrong diagnosis and treatment. You wonder “what if”. The thing is, it’s not helpful to dwell on it. What’s done is done, so going forward, what can we do to help raise awareness and advocate for ourselves? Lots of things!

      If you’ve been diagnosed with NMO, I strongly suggest checking out and asking for some MS vs. NMO pamphlets to give to any health care professionals you will be working with. I also highly recommend ordering the NMO guidebook. It’s full of EXCELLENT information for you and your doctor. In fact, see if you can, get one for your GP and your specialists. I’ve given them to mine and they were very grateful for the information.

      I am wondering what they are doing to try and shut down your immune system? If you’d like to talk about it, why don’t we move the discussion over to the forums? I’d be happy to connect with you and see if there’s any way I can help.

      I am sorry you’re having to go through this.