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.