Merry Christmas (sniff)

Sniff

It's not even Christmas yet and I've already received a surprise gift - a heavy Christmas cold. It's always the way, working hard up to the holidays then relaxing a little bit and getting ill. I can't even blame it on the consequences of Azathioprine as this has happened before (and also my wife has been coughing like there's no tomorrow for the last week, so there have been lots of germs floating about). I'd still like to know what role, if any, Azathioprine plays in these kind of infections. I get public transport to work every day, so am presumably exposed to all kinds of bugs, but don't get ill all that often. Should Azathioprine mean I am more frequently ill, or that when I am ill I get it worse or for longer? This is the worst cold I've had for a while but I'm not stuck in bed (some would say I'm a "difficult patient" in that respect) and it's not exceptional on the scale of things. I had another cold about three months ago and got it less severely than my wife. It's all a bit mysterious. Anyway, it won't get in the way of having a good holiday.

So I'd like to wish everyone - the regular readers and those who visit the blog occasionally or stumble across it at random - a very Merry Christmas and hope to see you all in 2013.

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Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Another Strange Case of CLIPPERS

Now that CLIPPERS has been recognised for a little while the number of new papers simply documenting cases has declined. There is at least some agreement about what constitutes CLIPPERS, even if there isn't a definitive test for it, so reporting new cases isn't, in itself, scientifically interesting. Of course, if the number of reported cases goes up, new research about the epidemiology of CLIPPERS may be required.

 

The new cases that are being reported seem to be unusual or novel in some way. A recent one from Dr Buttmann and colleagues in Germany concerns a 49 year old woman who has symptoms suggestive both of CLIPPERS and primary angiitis of the CNS (PACNS) (otherwise known as cerebral vasculitis, which was a candidate diagnosis for me for a short while). As well as the usual CLIPPERS symptoms this patient also had severe headaches and a seizure as well as other symptoms more associated with cerebral vasculitis than CLIPPERS. Dr Buttmann speculates whether this patient had unusual CLIPPERS, another condition which appeared like CLIPPERS or some combination of both conditions.

I have to say that, from my perspective, although these isolated cases are interesting, what I really want to see is something more detailed about number of reported cases and treatment options and responses in a large population. It is quite possible this information doesn't exist at present. It's a tricky situation as I obviously wouldn't wish CLIPPERS on anyone, or want the number of cases to rise. However, larger scale research may not happen when the number of cases stays small and there are already some treatments available.

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Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

The Eyes Have It ...

I went to the optician today for a regular (if infrequent) eye check-up. Inevitably when I was asked "Have you had any trouble with your eyes?" a conversation started about diplopia and how, in my case, it turned out to be of neurological origin (i.e. CLIPPERS) rather than because of any defect with my eyes.

One thing that was interesting (although hopefully not in the Chinese sense) is that I apparently still have a very slight nystagmus (involuntary eye movement) which is only visible when looked for down a microscope. This had been noted before, when I still had other CLIPPERS symptoms, but I had assumed it had cleared up along with everything else. Maybe there is some residual damage somewhere - at one point my consultant warned me I might have double vision for good too. Anyway as I can't detect it and it doesn't affect my vision at all I'm not going to lose too much sleep over it. I'll  make a mental note though, because if it gets worse over time it might indicate some renewed CLIPPERS activity.

 

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Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

It's Been A Little While ...

I'm conscious that I haven't updated here for a little while. Been away, been busy and (worst of all), my internet connection at home is currently dead. Anyway a few interesting things to report in the interim. The first was a story in a free newspaper in the UK (Metro) which I wouldn't normally pay too much attention to. However I looked into it and the sources were reputable so here we go. The story is here but I don't know if it will work outside the UK - apologies if not - so I will quickly paraphrase.

Fantastic green moss!

Essentially there has been some recent research looking into ways to "reset" the immune system in people with auto-immune diseases like Multiple Sclerosis. People think CLIPPERS may also be an auto-immune disease (I am not a doctor). The scientists designed artificial "nano-particles" to attach to Myelin  (which is attacked by MS) and essentially distract the immune system. The chief scientist was quoted as saying "The aim was to provide a targeted treatment unlike immunosuppression which weakens the whole immune system." The research paper details are here. Now this has only been tried in mice under very controlled conditions so far, so it is early days. My limited understanding is also that you have to have a very good understanding of the disease mechanism before you can design the appropriate particles - this is something we don't have currently in CLIPPERS. Still, with so few of us, it is encouraging that these kind of generic technologies might one day provide some hope for treatment of a whole range of diseases. 

Interestingly the BBC had another angle about MS recently, which also concerned "resetting" the immune system, this time using an existing drug which has already been licenced for use in other diseases. This kind of low-cost translation of treatments across diseases is also something which can provide at least a modicum of hope to us reluctant members of the CLIPPERS club.

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.