Reflections

Gotcha!

We're All Going On A ...

As I'm about to go on holiday - so things will quieten down here for a bit - I started reflecting on where I was a year ago. The direct geographical answer is "Rhodes, Greece". The indirect answer is "blissfully ignorant about all things CLIPPERS".  About a week after I got back last year I got my first CLIPPERS symptoms and the rest is documented here for all to see.

... Summer Holiday.

This year I'm fortunate to be in good health so far and, although the anniversary annoyingly won't quite work out, I'll be nearly steroid free when I get back (down to 2mg/day). The only minor blip at the moment is an elevated liver enzyme score (ALT) on my latest blood test (for monitoring adverse effects of Azathioprine). It's on the edge of the normal range so being kept an eye on for now. I haven't heard anything about my recent MRI so hopefully there wasn't much to see. Now all I have to do is remember to take it easy on holiday which after all is the whole point!

More Good News
Just read this morning that "Calcium pills pose 'heart risk'" which could be worrying for those of us on calcium supplements to support cortico-steroids. However "doubling" a small risk is still a small risk and for me the thought of Prednisolone, weakening my bones is more of a worry. So I'll be sticking with Calcichew-D3 while on Pred as my doctor advises. The usual disclaimer about me not being a doctor and my circumstances likely differing from yours applies here.

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.

People With CLIPPERS

The elusive Cyril.

You may have noticed a new page has appeared below the title-bar - People With CLIPPERS.  I've now heard privately from several people who have been diagnosed with CLIPPERS and thought it would be great if we can use the power of the InterWeb to record and map some of these cases in a suitably anonymised fashion. So if you have been diagnosed with CLIPPERS please take a look and see if you want to contribute a brief summary of your CLIPPERS experience. There's absolutely no obligation and no nefarious, underhand motivation on my part except for thinking it would be fantastic to get more cases listed here than have appeared in any of the scientific papers published to date.

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 Now in Asia

Internal Medicine 51(9), pp 1115-1119, 2012

A new CLIPPERS case has just been reported in East Asia in the first CLIPPERS-related journal article I've seen for a while. You can read the full paper here. 

In brief though, it describes a 54 year-old woman with what sound like fairly typical symptoms of CLIPPERS (diplopia, paresthesia, gait disturbance) backed up by bright lesions towards the back and base of the brain visible in MRI. The authors are particularly keen to discuss possible allergy-based triggers for CLIPPERS. I have a history of mild allergies (occasional asthma, eczema etc) but wouldn't want to read too much into it at this stage. I'm trying to find out whether my "serum IgE" was elevated, as has been noted for several CLIPPERS patients, and will report back here

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.

Aside: What Passes for Humour Round Here

Please note this is an aside that has nothing directly to do with CLIPPERS even though it relates to a CLIPPERS-monitoring visit to the NHNN. Normal CLIPPERS-related service will be resumed as soon as possible.

Funny?

 

(while filling in form)

NURSE:  "Do you have any pets?"

BILL:      "Are you making this up?"

NURSE:  "No" (shows me the question on the form)

BILL:      "Next you'll be wanting to know what colour underwear I've got on!"

NURSE:  "Mr Crum, if I wanted to know that I would take you next door and ask you to change your trousers."

Serves me right for trying to be a smart-ass!

Not Funny! (and Not Advised!!)

Sending the following to my wife at the end of my Day-Care appointment.

They drilled a couple of holes for a look-see.

(The bandage was actually from my arm where the MRI contrast was injected and even though the train wasn't too busy, yes, I probably did get some funny looks.)

 

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.

International Rescue

George

Genetic and Rare Diseases Information Center (GARD)

Well this blog has passed the quality checks for resources linked to by GARD and is now listed here (under the Organizations tab). This might explain the slightly increased traffic I've seen here recently although Mark Zuckerberg still has nothing to lose sleep over. Still, if there is anyone out there with a probable/presumptive/possible CLIPPERS diagnosis who wants to share a bit of their story (anonymously if you like)  let me know (see the FAQ) and I'll start a summary page.

Prodding and Poking

Another couple of days of prodding and poking booked in for next week at the NHNN. As far as I know this is comfy chair,  "Brain MRI" and "Case Review", and no-doubt a bit of walking in a straight line and tracking various things being waved in front of my eyes. Also no doubt a medication review which could be important as on the current schedule I'll be off cortico-steroids completely in 6 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.