A neurologist calls ...

The greenest caterpillar I ever saw!

... or rather, I call on a neurologist. 

Last week was my first (and likely only) appointment this year with my neurologist who has been managing my care since I was diagnosed in 2011. Since I last saw him my drug regime changed slightly due to some worries about blood tests. My understanding was that my total white cell count was dropping too low which would make me susceptible to infection. 

My neurologist clarified this by explaining that there are several different types of cells in the total. The one which was causing concern in my case was the neutrophil count. The web tells me that neutrophils fight infection and if there are too few of them even bacteria normally found in the mouth, on the skin and in the stomach can cause serious problems. Now the drug (Azathioprine) I take for CLIPPERS aims to reduce the lymphocyte count - lymphocytes are the cells associated with CLIPPERS. But clearly for whatever reason, both cell counts were being driven down over the summer. He was reassured by my more recent test results and my Azathioprine dose is high enough (based on body weight) to still be having an effect on lymphocytes. We did the usual eye-tracking and finger-pointing tests and some checks on muscle-tone and reflexes and nothing cropped up there.

We also had a discussion about long term Azathioprine use. Unfortunately we don't know for sure if that is what is keeping me well. I said that if the risks of serious illness associated with taking Azathioprine long-term were low then I felt I had more to lose if I stopped taking it and suffered a CLIPPERS relapse. He said he agreed but it was hard to be definitive because of the lack of knowledge about how CLIPPERS works. So I said I would keep taking the tablets. 

It is also sobering when reminded that my status is "in remission from cerebellar disease" which sounds like I am stuck in some kind of waiting room.

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.

Still in remission from cerebellar disease ...

... 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.

CLIPPERS News

 

(Unfortunately the biggest CLIPPERS news this week is not about the neurological condition but about the owner of the American basketball team. I can't compete with that, but can offer a couple of more modest news items. )

I met my neurologist yesterday and, to summarise, "no news is good news". I am being maintained on Azathioprine and will be scanned again in the next few weeks to be on the safe side. Vision (follow-the-finger) was judged good and balance/walking also OK. I'm not brilliant at standing on one leg with my eyes shut but would argue that was also the case before CLIPPERS arrived on the scene!

Last week, I received an update from Dr Tobin at the Mayo Clinic regarding the CLIPPERS repository. As a result of it appearing on this blog, 9 people have signed up so far (including me). Dr Tobin thinks this is an excellent response given the rarity of the condition, and this number of volunteers will allow the team to expand on their originally planned work.

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.

First Clinic of 2013 ...

The good old NHNN.

Well after a rather uneventful time on the CLIPPERS front I had my first clinic appointment for a while a couple of weeks ago. Essentially a meet and greet with my consultant, I did a few of the usual tricks. First was "walking in a straight-line heel-to-toe" (being able to do this was my personal benchmark of progress when my balance was screwed). Second was "touch your nose, now touch my finger". Third was "follow my finger without moving  your  head". I'm sure these are familliar to anyone with CLIPPERS or probably most neurological problems. I think he seemed reasonably happy and I didn't have any changes to report. I feel myself "shuffling" a bit sometimes but I can't measure it and it doesn't show up if I do any mobility tests. Might just be impending middle age. 

Anyway, I was a bit concerned he might decide to try and wean me off Azathioprine - my view is it's too early for anything like that. So I said "I'd like to stay on Azathioprine for at least another year." and he said something along the lines of "It will probably be a lot longer than that.". If it keeps me well, I'm not complaining. My consultant also reminded me that as I didn't have the brain biopsy, there is a missing piece of information in my diagnosis since the "Chronic Lymphocytic" bit of CLIPPERS hasn't been proven ... so technically it could still be something else (now that would be ironic ...) . But as I fit the CLIPPERS pattern very well on all the other tests and respond to the treatment it is still "presumed CLIPPERS". I requested another MRI as the last one I had was about 9 months ago, just to see what is going on, if anything. I'll let you know when I have that in a few weeks.

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.

A Very Merry CLIPPERS Christmas!

 

As we move towards the Christmas holiday period there will be slightly less frequent updates here for a little while - not no update, just not quite the as-regular-as-clock-work twice-a-week schedule that hopefully one or two have got used to. For those who want to keep up to date without the hassle of checking back here, a quick reminder that you can Subscribe By Email from any page and receive the latest updates automatically.

In terms of news, I'm now maintained on 15mg/day Prednisolone and two weeks into Azathioprine which has now moved up to 50mg twice a day. I feel pretty good and everything is pretty normal as far as I can tell. I've just started a weekly schedule of blood tests to monitor the Azathioprine effects on my blood count and liver and kidney function. I thought that was it for 2011 ...

CLIPPERS Progress Assessment

Just back from 2 days as a guest of the Day Care Unit at the NHNN, at Queen Square. This for reassessment, progress reports and a decision about future treatment options. The background is that I am now in the last week of my decreasing steroid taper but there is growing evidence that CLIPPERS is a chronic condition which must be carefully managed with continued drug treatment to prevent relapse.

Autumnal Queen Square

Aside on Hospital Life

And now a brief aside from the world of CLIPPERS for some reflections on hospital life. Although I've worked in and around hospitals for much of my career I had never before been admitted to one as a patient. So all of a sudden I found myself as an in-patient for several days of unspecified tests and facing an uncertain outcome. So how did I feel? Bloody marvellous as it turned out.