I am writing this as i am trying to find out as much information as I can, to try and support my mum and also to try to understand what is happening and what to expect.
So, my mum's story:
My mum was rushed into hospital on 27 July by ambulance following being unwell for about a week, her symptoms were high temperature, terrible headache, light sensitivity and sickness. They assumed viral meningitus, and did a lumbar puncture which was contaminated and couldn't be tested. she started to improve after a few days and was sent home.
She then had another relapse in September, the same symptoms and was taken into hospital and kept in for more in depth testing and during this visit they started mum on a course of steriods. she had another 2 lumbar punctures, MRI, CT and PET scans and loads of blood tests. Still no diagnosis.
On the 17th October whilst still on steriods I had to call an ambulance out for the same symptoms, it comes on very fast - temperature very high, very painful headache and light sensitivity. Back into hospital she went........ this time though she was put on a neurology ward. In a nutshell she had the MRI scan with dye and this appears to have shown a lesion in the pons area which they have written on her discharge note is related to a condition called CLIPPERS. Last Friday she was discharged, the neurologist said there was an issue in the pons area but he didn't feel this was related to her being so unwell and that she will be booked in for a thyroid biopsy.
She called me today and said that the discharge note says about CLIPPERS! She has a follow up appointment and is currently having her steriods reduced (I don't know what she is taking).
I wondered if this sounds like CLIPPERS to you? I am just unsure what to think at the moment and my poor mum is terrified of another relapse as they are really trumatic.
Jenny, sorry to hear about your Mum. I'm not a doctor but have been diagnosed with CLIPPERS. My symptoms are not as debilitating as hers. I've not heard of high temperature and light sensitivity being symptoms of CLIPPERS. Symptoms do vary a lot. CLIPPERS displays a distinctive pattern on MRI.
There is a recent article on the current state of understanding of CLIPPERS. Published by the Department of Neurology, University of Rostock, Rostock, Germany. Full text available on upper right side of page. http://www.ncbi.nlm.nih.gov/pubmed/24028073. Bill pointed to this a few weeks ago.
A slow tapering of steroids seems to be the consensus for treatment. After IV Solu Medrol in March and 3 months of 60mg/day of predinsone I've tapered finely to 20mg/day without relapse. I'll be working with a new neurologist to reduce steroid use further, but it will be tricky and not without risks.