Aside: Contagion

(This is another of those occasional Asides which are only a little about CLIPPERS.)
 

I went for my flu jab last week; I've only started having them since being treated for CLIPPERS so this is only the second. In the UK the good old NHS ensures that as a member of an at-risk population I automatically get an invite to get one for free at my local clinic. So I've had the jab and it was all very straight-forward and no trouble at all. Now I'm wondering what I've been exposed to along the way.

Cover mouth, cough, then wash hands.

I made the appointment and showed up at the clinic. Which was full. Of people coughing - half of them seemed to have flu already even though it was a special flu-jab day. So I checked in and sat down away from the worst of the splutterers. The check-in at my practice is computerised - there is a touch screen and when you arrive you click the relevant brightly-coloured button to select "male" or "female" and your date of birth, after which it identifies you and asks if it has found the right appointment. So far, so good. Perhaps because I got used to it in hospital, I automatically used the handwash next to the screen and sat down for my appointment. I didn't have to wait long, probably 5 minutes or so. However in that time a steady stream of people checked in at the same screen and not one of them used the handwash before or after coughing and touching the screen (or anything else). Given that everyone in the room was in an "at risk of infection" category (about 90% were pensioners and the rest pregnant women) they didn't seem to be taking many precautions. If any one of them had been exposed to Norovirus for instance then this packed room seemed an ideal place to transmit it. Anyway, pretty soon I made it into the injection room and once I'd convinced them I really was supposed to be there (not being elderly or pregnant) the jab itself was barely noticeable.

Next year I'm taking more precautions.

I'm not about to turn into Michael Jackson and wear gloves and a facemask everywhere. Still having had a few bugs in my time and not wanting any more while my immune system is compromised I think I'm entitled to be a bit paranoid.

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 And Other Nasties

Station Cat - seen on the way to work occasionally

News about CLIPPERS is a bit thin on the ground at the moment. Hopefully, like the retail industry, the journals are saving everything up for the Christmas rush. In the mean-time, I was flicking through a paper called "Autoinflammatory grey matter lesions in humans: cortical encephalitis, clinical disorders, experimental models" (unfortunately not open access but you can read the abstract). Hidden away was a brief mention of CLIPPERS, essentially commenting that it is a new example of a disease which has a " ... unspecific inflammatory reaction which may also affect grey matter". This much we know, but it is interesting that there are now attempts in the literature to compare and contrast CLIPPERS to other diseases - much of this paper was about Multiple Sclerosis which was a candidate diagnosis in my case, at least for a week or so. In fact this paper approached things from a mechanistic rather than a disease perspective - it considered a particular way in which damage to the brain could occur and then discussed the various different disorders which could cause it.

The other thing which I found both interesting and worrying last year, was the sheer number of different things which can afflict us. When I was in hospital the doctors would tell me they were going to test for all sorts of things which I had never even heard of. Mostly I didn't even know whether to worry about the diagnosis if I got one. If I'd known about all these different maladies before I was investigated I'm sure I would have got really stressed out trying to work out which it could be. As it turned out, with CLIPPERS I didn't know whether to worry about the diagnosis and I'm not sure the doctors did either!

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.

Update: Nothing To See Here.

I left a few loose threads hanging over the summer about blood-test blips, strange aches and pains etc. So here's a quick catch up:

Blood

One of my liver enzymes (ALT) was a bit raised after a previous blood test so another was booked in. That enzyme level was OK the next time but then some other things were off - platelet level (I think) and bilrubin. So another round of tests followed a month later and now everything has settled down to the extent I can move back onto a 3-monthly testing schedule.

Bone

I started having some pains, mostly in my knees and hips after  I came off the steroids. So I agreed to go and have some knee x-rays at the district hospital to check for osteo-arthritis related damage. I felt like a complete fraud as to get there I walked for 10 minutes up an enormous hill with no problem! Anyway the x-rays were reported normal and I have an invitation to see my GP again if I want. I'm going to leave it for now as it's not a big problem and I'm a bit doctored out at the moment.

Drugs

Annual flu jab is all booked in - very important. Apart from that still popping the Azathioprine (100mg twice a day). It's now 4 months since I stopped taking Prednisolone and no sign of CLIPPERS symptoms at the moment. However, I think I'll want to get a year off steroids and symptom-free under my belt before I get too excited.

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 to October 2012

I've heard from some more people who have been diagnosed with CLIPPERS and thought you might be interested in a breakdown. (I won't be passing on further details unless told to - have a read of PeopleWithClippers if you want to go public.)

Australia: 1, Belgium 1, Canada: 1, Netherlands: 1,
Spain: 1, USA:3 (+1?), UK: 1 (me!)
= 9 (or 10?) total

So there's a few of us and possibly more who are reading quietly in the background. From what people have told me about their background and symptoms I can see no pattern at all in terms of possible causes or demographics. I would be surprised if anything was that obvious since the doctors involved in the various research papers have presumably gone through patient backgrounds with a fine-toothed comb. Still I hoped something might leap out - never mind, have to wait for the professionals to figure out what is going on.

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 Talking About CLIPPERS

Dr Keegan gave a talk about CLIPPERS at the National Institute of Health (USA) just over a week ago. From the events calendar:

"For his lecture at NIH, he will discuss Clippers Syndrome and offers the following objectives:
-Identify and treat a chronic inflammatory CNS disease
-Review differential diagnosis of brainstem predominant inflammatory disease
-Add a challenging acronym to neurological differential diagnosis"

This all sounds very interesting. We definitely want to identify and treat CLIPPERS and I'm assuming the third point is to promote CLIPPERS as a possible diagnosis which should be considered more widely. Raising awareness of CLIPPERS within the neurology community  can only be a good thing as presumably, the more cases are found, the more likely research will be done to find definitive causes and treatments.

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.