Another Case

In a recent abstract from a conference program, published in the Journal of Investigative Medicine (vol. 61, no.2, Feb. 2013), a new case of CLIPPERS in the USA is described. This case is slightly more "classic" CLIPPERS than some of the more recent reported cases. Essentially a 52 year old woman suffered from left-sided weakness and gait ataxis which progressed to diplopia, disarthria and right-sided facial numbness. The doctors were initially stuck between possible diagnoses of CNS lymphoma, neurosarcoidosis and inflammatory disease (including CLIPPERS). These were also considered for me along the way and are all difficult to diagnose. This patient had a good response to treatment with corticosteroids and Azathioprine, although the authors noted that other non-CLIPPERS pathology also seemed to be present.

The authors suggest that patients with CLIPPERS-like signs can be treated for CLIPPERS without brain-biopsy. This point still seems controversial - there are a growing number of patients (including me) who have been treated without brain-biopsy to confirm the "Lymphocytic Inflammation" part of CLIPPERS. However, even with successful treatment, there remains diagnostic uncertainty without physical examination of brain tissue. Currently the diagnostic and treatment decisions have to be made carefully on a case by case basis.

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.

New CLIPPERS Forum

The eagle-eyed amongst you may have spotted a new page in the bar above. I've added a forum to the blog (courtesy of Nabble) so anyone can post questions, requests for advice, CLIPPERS wisdom or other related anecdotes. This is a bit of an experiment - by the slowly increasing number of CLIPPERS-related emails I get, I think there is a need for somewhere that broader discussion can happen. On the other hand, if the forum is empty in 12 months I'll know that's not the case!

 

I'll have to change the setup if it fills up with junk too quickly, but so far that hasn't been a problem. Apparently, I am in some kind of grace period where the forum is run without advertisements. When that expires, in three weeks or so, I'll review how intrusive the advertising is and see how to proceed. Any adverts that do appear should only be on the forum page and enable Nabble to maintain their free forum service.

 

I put an initial post in the forum to welcome everyone. At some point I will add some proper guidelines but for now I think it best to let this thing evolve (or not as the case may be). Having said that, one or two things should be remembered if you intend posting to the forum:

 

1. remember this is public - anybody can read this
2. think twice (or thrice) before posting email addresses or contact details
3. this forum can't be a substitute for expert medical opinion

 

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.