Sunday, 22 February 2015
An Answer, of sorts.....
Sunday 22nd February is World Encephalitis Day
As I have said previously, Ava came along to Derby and attended a meeting with a Consultant and a member of staff from the CEO's office after I raised concerns about the lack of information being passed onto myself. One of the outcomes from this was that Celia would be referred to the National Neurological Hospital in London, one the top hospitals that deals with Neurological conditions in the world, a positive move.
After a few weeks of waiting, Celia was finally moved to the Hospital and I made arrangements for me to take a day off work to go and see her and to meet up with the Doctors there. Off to went on the train to London and walked the shortish way. Finally found the ward were Celia was admitted and a Doctor came to talk to me. They explained I couldnt actually see her that day as she was sedated, something they had to do as she was not settling for the MRI scan they wanted to undertake. The Doctor also explained they had taken fluid samples from the lumbar region for further analysis and they had also requested the samples from her biopsy. The samples may offer some insight, but die to the age (abt 3yrs old) they might not be able to offer all the answers, This just seemed more of the same, but i hoped the specialty of the hospital would provide a better analysis methods and this some diagnosis. The doctor asked me to recount Celias initially illness and how she was over the period time. They did apologies in what seemed a wasted journey for me (in not being able to see her), but they did appreciate the information I was able to pass onto them. Any diagnosis would be passed onto her consultant in due course.
Some weeks later, I had to attend an appointment with her consultant in Derby to pass on feedback from her visit. Firstly, there was nothing they could say as a concrete diagnosis in terms of her current condition other than 'Non Descriptive Dementia'. This was mainly based upon the diagnosis from the psychological assessments resulting from encephalitis. However, from the tests the National did conduct, an area of interest was the T-Cell count in her spinal fluid relating the measles virus. It was higher than a normal persons level who had suffered from measles (a count of 2 per 100,000 compared to 0.1 per 100,000). This was interesting as the measles virus can cause a form of encephalitis called Subacute Sclerosing Panencephalitis (or SSPE) and it is a known chronic form. Coupled with her mental and slowly diminishing physical abilities, it showed a possibility of her initial illness some 3yrs previous. The tissue samples from the biopsy showed nothing to back this up thou. However, they couldn't say with any high degree of confirmation as the T-cell count for someone who has suffered with SSPE is about 10 per 100,00, so Celias count was much lower. She was in a bit on 'no mans land'. The second area of interest the National referred to was the inconsistent activity of her thyroid and her iodine levels. This may lead to an auto-immune condition called Hashimoto's Encephalopathy which relates in the body producing high levels of anti-thyroid antibodies. Once again, this may be factor with Celia's condition, but they couldnt say for certain or with any great conviction that this was the cause of her illness, as they were dealing with historical tissue and data samples, but it is a possibility.
So, it is a possibility that Celia suffered from SSPE or Hashimotos Encepalopathy (HE). Both are rare & chronic neurological conditions. I think, and it is my 'non-medical' thoughts that 1 lead to the other. Celia may well suffered from a variation of SSPE initially, but with the weakened brain capacity it lead to the usual activity of her thyroid gland and thus the HE. As I say, I no Doctor and certainly no neuroscientist, it is my thoughts only.
If you need more information about encephalitis, click on the jigsaw pieces at the top of this page, it will take you to the homepage of the Encephalitis Society.
For the support that the society has offered to both Celia and myself - as well as many countless others, I am running in the London Marathon this year to riase much needed funds so they can carry on with the work. Please, if you can, donate some money by clicking on the picture of myself, near the top again. It will take you to my fund raising page.
Marathon Training Update:
63days to go, or 9 weeks. Last week is what I call cut back weel. A week where the training is a little easier to help the stress on the body. Also managed to fit in a trip to the physio to have a sports massage to help the muscles. This week, back to normal with a total of 30miles for the week with the LR of 15 today. The next 6 weeks will be make or break as the mileage will ramp up.