Still in remission from cerebellar disease ...

... is the official word from my neurologist who I saw in his clinic in London last week. I did a few familiar tests such as walking "heel-to-toe"; he remembered that I had previously said I practiced this one at home to check if I had symptoms so he also wanted to make sure I couldn't still do it simply because I had been practicing so often! The other two tests were to do with eye coordination. One involved moving my finger from my nose to  his finger (and back again) while he waved his finger around in front of me. The other involved holding my head still and tracking his finger movement (left-right-up-down and then swiftly left-to-right) by only moving my eyes.

A medical student was present who helped with some of these tests and said I had nystagmus. I was surprised as I knew I had a lingering very mild nystagmus for a while, but I thought that had resolved and hoped it wasn't a sign of recurring CLIPPERS symptoms. Fortunately, it turned out that the student had been moving his finger too far/fast beyond the extremes of my left/right vision; everyone gets nystagmus if you try and track at these extremes.

We had a short discussion about continuing treatment. Regular and long-term readers of this blog will know that I have been maintained on Azathioprine alone (100mg twice a day) for three years now. We agreed that because of the uncertainty surrounding the disease, the possible catastrophic consequences of a relapse and my good tolerance so far of this drug, that this treatment should continue.

Interestingly, I recently came across a letter (unfortunately not freely available to read) about long-term CLIPPERS management which mentioned one or two cases of patients on various drug combinations staying well, or at least staying stable, for several years. Long term management is bound to become more of an issue in the future but it is not at all clear whether there is a single optimal treatment strategy or whether different treatments should be tailored for different patients. It may be as much luck as anything else that I have benefited from Azathioprine so far.

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 in the news

The Detroit News (not a publication I was previously familiar with) has recently run an article about CLIPPERS based on the experience of Roger, a military veteran in Michigan. You can read the article here:

http://www.detroitnews.com/story/life/wellness/2015/05/25/worlds-st-case-disorder-michigan/27944751/

(I can't guarantee this link will stay working forever as it is on an external site).

It's an interesting story and reminded me of my own experience when after several weeks of uncertainty one of my doctors produced this article about this "thing called CLIPPERS" which seemed to describe quite accurately what I had. I did wonder about the title: "World's 51st case of disorder is in Michigan". I haven't counted lately, but I suspect the number of published cases may be around (or probably exceed) 51 as they say in the article, but I also suspect the number of diagnosed cases worldwide runs into the hundreds. Whatever, it is still a very rare condition and stories like this which help raise the profile can only be a good thing. I hope Roger continues with his recovery from CLIPPERS.

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.

More blood.

Filled tubes, 9 of them.

So, following on from last time, I finally managed to get my blood sample collected for the Mayo CLIPPERS study. In fact, I had no problem filling all 9 tubes - I have good veins apparently. Hopefully it survived the trip over the Atlantic with FedEx and will contribute in some small way to helping understand more about CLIPPERS. 

Two warts merged into one.

As of the beginning of June, I am over four years since first symptoms and still taking Azathioprine with few side-effects. Apart from occasional blips in liver scores, I have a few warts (7ish) which is apparently quite common on Azathioprine. They are confined to fingers with a few periungual ones for good luck. Not very pleasant, but could be worse - I had them blasted with cryotherapy recently which will hopefully help. That's enough about warts.

Finally, I'm not sure how long this has been live, but CLIPPERS now has a short entry on Radiopaedia (think of Wikipedia, but for doctors)

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.

Blood

A box of stuff.

A bag of tubes.

I realise there's been a bit of a gap between posts recently - sorry about that.  In the interim I received the kit from the Mayo Clinic to allow my blood to be transported half-way round the world within a day or so of being drawn; I never imagined one day my blood would be flying to America. When it arrived, the box was big, very big. However I soon discovered that most of the volume was taken up by the polystyrene container which will hopefully ensure everything arrives intact. There is a little bit of paperwork, but most of it has been filled out already and fortunately, as a non-US citizen, I don't need to fill out the tax declaration. 

As someone who is nearing 4 years since first CLIPPERS symptoms, and has had over 3 years of normal life on Azathioprine, it would be nice to think there was something interesting in my blood. I suspect though, that the key will be to get sufficient patients enrolled that some subtleties start to emerge from the CLIPPERS population as a whole.

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.