Visiting the NMO Clinic
The hospital in my city does not have a NMO specialist, NMO nurses or an NMO team. My neurologist is an MS specialist but is still very supportive when it comes to me and my symptoms. However, I was always worried about not having the proper support like others do as my disease is so rare and not many know anything about it.
I found an NMO clinic near me
I was then made aware of the NMO clinic in Edinburgh which runs twice a year. I contacted my GP and asked to be referred. The referral was successful and after a few weeks I received an appointment. The appointment was on the 23rd of June. My parents and I travelled for around an hour to get to the hospital as it was in a different city. I had a lot of things to ask and tell the NMO specialist so I kept a list in my notes just incase I forgot.
Comparing my old and new MRI results
I arrived at the hospital 20 mins prior to my appointment, went to the receptionist to sign myself in, and sat in the waiting room until my appointment time. I met the NMO specialist along with two other neurologists. We spoke about my attack, the treatments I was on, the treatment I am on now, and the lasting symptoms I have in my day-to-day life. We also compared my initial MRI scan from my attack to the one I had a month ago, and we saw incredible improvement in the lesion of my brain.
Re-checking my antibodies
The specialist did some checks and then asked me if they could take blood to see if my antibodies were still positive. I was AQP4 positive during my attack, but if they were negative, that would not change the treatment plan I am on, as my attack was very severe and we would not want to risk another relapse.
I felt so supported
I was taken to a different room and blood was taken from me to test for the antibodies, but two extra vials were also taken for research of NMOSD, which they asked if they could take from me. I was then taken to meet the NMO nurses. They were incredibly supportive, and they gave me their email addresses and phone numbers to contact them whenever I need support. They asked about the symptoms I have now and gave me helpful tips on how to make life easier whilst living with a disease that causes limitations. They also informed me of a counsellor they have access to if I ever think I needed to talk to someone or need any extra support.
A focus on mental health
One thing I appreciated was, not only did they ask about my physical condition, but also how I was doing mentally as well, as that is just as important. They understood how going through something like this can affect you mentally, which can be so difficult to recover from.
I don't feel alone anymore
I was so appreciative of the support I received during my appointment. When I was first diagnosed, I felt alone and clueless about my disease, and now I have so many people who are experts in our disease there for me if I ever need anything. Having support changes everything.
Were you misdiagnosed, prior to being diagnosed with NMOSD?