A Not So Curious Case of CLIPPERS?

This month another CLIPPERS case study appeared, a report about a 56 year old man who I'll call "Sheldon" for ease of discussion. Although these single subject studies are limited in the sense that small numbers of cases don't allow general conclusions about CLIPPERS to be drawn, they are still of interest given the relatively small number of published reports to date. To me the interest in the recent report from Biotti et al is that this case is unremarkable and seems to fit fairly well with the bulk of the other reports - and with my own experience.

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

Once More Unto the Breach, Dear Friends

Six months ago I first got symptoms of what I now know is probably CLIPPERS. This week it's time for two days of reassessment, fortunately as an out-patient this time. This also coincides with the last few days of my reducing steroid course which so far has done it's job and kept CLIPPERS at bay.  So with the benefit of hindsight, time for a brief recap of the last few months.

You Oligoclonal What?

One thing related to diagnosis which was mentioned to me in hospital a couple of times was oligoclonal bands. I'd never heard of these, had no idea what they were and didn't even know if having them was a good thing or a bad thing. Since reading some CLIPPERS papers I noticed they always comment about oligoclonal bands so they must be important; I've also seen them often mentioned in connection with Multiple Sclerosis diagnosis. So in case you were wondering ...

A Curious Case of CLIPPERS?

One of the problems with diagnosing CLIPPERS is that there isn't a definitive test. So a case for CLIPPERS has to be constructed from the available evidence and by excluding other conditions. The definition of CLIPPERS is still somewhat vague with some open questions about whether cases which don't fit the established pattern are CLIPPERS, or some other unrecognised condition, or a combination. A case recently reported as CLIPPERS by Guillaume Taieb and colleagues demonstrates these problems.

Treatment - The Next 4 Weeks

Some readers have asked how my treatment has been going since the last update.

October - 40mg/30mg Prednisolone
Things are continuing to improve.  The speech "glitches" have virtually disappeared. The walking coordination glitches have reduced in intensity and frequency and are absent for large portions of the day. I would put my balance/coordination at around 95% of normal. Apart from insomnia, the most obvious (to me) remaining symptoms are the tightness in my right forearm which also locks up further with the walking coordination glitches. Also some intermittent tight feeling across my lower right ribs but this is at the level of discomfort rather than anything worse.

Prednisolone dosing plan

Insomnia

I've never had significant problems with sleeping beyond the occasional restless night or early waking. But this year I've had two recent but different episodes of insomnia, one pre-CLIPPERS and one current, which go beyond simply "not being able to sleep". I don't know if they are stress-related, CLIPPERS-related or prednisolone-related. In both cases I do get some sleep and am not incapcitated like Al Pacino but the regularity of the sleep disturbance is strange.

If only it was this easy

Frying Tonight !

I've worked in and around medical imaging for most of my career. In that time I've mostly worked around MRI applications and as a result had a number of MRI brain scans as a volunteer. You can do this with MRI quite safely as there are no known mechanisms by which the magnetic fields and radio-frequency pulses used in the machines can harm human tissue. In technical terms, MRI doesn't use ionizing radiation. Other common medical imaging techniques like X-ray, CT and PET do use ionizing radiation and there is a risk-benefit aspect to their use. Most people are very wary of "radiation" and tend to regard any exposure as far riskier than it actually is. This is probably due to associations with the nuclear arms race and accidents at places like Windscale, Three-Mile Island, Chernobyl and Fukushima - which isn't to say these weren't dangerous and highly undesirable events.

Why I've Got CLIPPERS ...

... as suggested by a variety of people.

When something unexpected happens it's a natural reaction to think about the cause. For medical conditions establishing cause is often part of the diagnostic process. However there are many illnesses for which there is no obvious cause. Put another way it's hard to find a common link between people which might either explain the cause or at least predict who is more likely to be affected. So far with CLIPPERS there hasn't been an identified cause or common link, just a description of symptoms, findings and treatment response. However that hasn't stopped many suggestions being put forward (by others) for why I probably have CLIPPERS. So just for the record here they are.