... is the official word from my neurologist who I saw in his clinic in London last week. I did a few familiar tests such as walking "heel-to-toe"; he remembered that I had previously said I practiced this one at home to check if I had symptoms so he also wanted to make sure I couldn't still do it simply because I had been practicing so often! The other two tests were to do with eye coordination. One involved moving my finger from my nose to his finger (and back again) while he waved his finger around in front of me. The other involved holding my head still and tracking his finger movement (left-right-up-down and then swiftly left-to-right) by only moving my eyes.
A medical student was present who helped with some of these tests and said I had nystagmus. I was surprised as I knew I had a lingering very mild nystagmus for a while, but I thought that had resolved and hoped it wasn't a sign of recurring CLIPPERS symptoms. Fortunately, it turned out that the student had been moving his finger too far/fast beyond the extremes of my left/right vision; everyone gets nystagmus if you try and track at these extremes.
We had a short discussion about continuing treatment. Regular and long-term readers of this blog will know that I have been maintained on Azathioprine alone (100mg twice a day) for three years now. We agreed that because of the uncertainty surrounding the disease, the possible catastrophic consequences of a relapse and my good tolerance so far of this drug, that this treatment should continue.
Interestingly, I recently came across a letter (unfortunately not freely available to read) about long-term CLIPPERS management which mentioned one or two cases of patients on various drug combinations staying well, or at least staying stable, for several years. Long term management is bound to become more of an issue in the future but it is not at all clear whether there is a single optimal treatment strategy or whether different treatments should be tailored for different patients. It may be as much luck as anything else that I have benefited from Azathioprine so far.
Read other articles in this series at Living With CLIPPERS.
Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
