Nobody knows

Sorry for the silence for the last three or four weeks but the old ways of the NHS are hard to figure out sometimes.

I was told sometime in October that I would be going to the National Hospital for Neurology and Neurosurgery in Central London for investigations 'in a couple of days'. That weekend myself and Jay were going to spend the weekend at the Graham Hill unit, which is a purpose built flat for wheelchair users. We were the both excited as it would be the first time we could spent time together in 110 days.

You know what happens next.

I was told I had 1 hour to pack and was transferred to the other hospital on a Thursday and over the next 4 days had one blood test and met with my consultant once, so there was hardly a rush to get me there.

I was also told the only reason I was there was for a 'couple of tests'. 3 and a half weeks later I returned to Stanmore.

The doctors at the hospital itself were extemely switched on. My consultant Dr. Manji was excellent and referred me to several specialists in various areas.

Obviously the first issue was the ascertain the growth of the lesion and when the operation was to take place. I went for a PET scan which is the latest, greatest scanning method and involves radioactive isotopes being injected into the body to highlight areas of inflammation. It showed that I have inflammation of the spinal cord, which we all knew months ago. Bit of a waste of a £1000 scan but at least there is no inflammation of the brain.

So the registrar, consultant and the surgeon, Mr. Casey http://www.uclh.nhs.uk/GPs+healthcare+professionals/Consultants/Mr+Adrian+Casey.htmall met and decided that surgery is not the answer.

They said that there was no clear evidence that the lesion had grown to such an extent that surgery was necessary and unavoidable and that I should be scanned in a few months to see what has happened in terms of growth. The surgeon said the risks of further spinal surgery were so great that surgery should be a last resort.

So as it stands they are not convinced the lesion has grown and don't want to operate. I will have an MRI in a few months to see if there has been any change.

The other issue was whether the inflammation was caused by an infection.

I met with Prof. Chiodini http://www.uclh.nhs.uk/GPs+healthcare+professionals/Clinical+services/Pathology/Professor+Peter+Chiodini.htm
who is a parasitologist and we went through the bilharzia angle. I finished taking all of the bilharzia drugs and they didnt seem to make any difference. He thought the dose I took was way too high but said that if any parasites were in my body they were definately dead now. I had loads of blood tests to look at other infectious causes. I also had a lumbar puncture which didnt come up with anything revelatory.

So most infectious diseases have been ruled out, but as there are thousands out there I will continue to be tested.

I also met with D. Scott http://www.uclh.nhs.uk/GPs+healthcare+professionals/Clinical+services/Infectious+diseases+(Hospital+for+Tropical+Diseases)/Infectious+Diseases/Dr+Geoff+Scott.htm
who specialises in TB and it was decided that I continue with the TB treatment until it is finished in January.

On a brighter note, they seem to have ruled out cancer and they are convinced that it cannot be MS.

After being the subject of loads of tests and investigations, the doctors at Queens Square decided they don't have a clue what is wrong and optimistically told me to wait and see what happens in terms of my body.

I haven't made any improvement whatsoever and the doctors have done as much as they can so it looks like it is the end of the road in terms of diagnosis so I need to focus on my rehabalitation.

Otherwise I am happy to be back at Stanmore and the next step is to organise a place to live.

The Wandsworth Occupational Therapist went to the house at Lucien Road and decided I can live in the front room until a suitable property is found which is not ideal as I will have to eat, sleep and s**t in one room for god knows how long. So that is next big hurdle for me to overcome.