Pretty as a picture

This is not a pretty sight but then MS is not pretty.
Since the early days, post DX, I've often wondered what my lesions look like. How many there are, exactly where on my brain and in my spine. I've seen pictures of other people's MRI scans. Do a simple Google search and you will come up with a wide variety of images. Or find it on Wikipedia: Wikipedia Multiple Sclerosis MRI.gif

Today for the first time, on Facebook, I saw something other than the black and white images or diagrams. A picture purporting to be showing Multiple Sclerosis lesions. It was posted on a Multiple Sclerosis Information page. It looks horrible:

I hate to think bits of my brain look like this. They probably don't. After the picture had been shared on various Facebook walls (including mine) this comment was posted:
Dave Curtis Um, no, MS lesions do not look like this. This is a random JPG which somebody hijacked. A more plausible explanation for it is that it shows tapeworm infestation as explained here (you'll see how the original text got removed from the doctored image you have): http://www.scienceinafrica.co.za/2002/june/worm.htm

Tapeworm and the brain

I'm glad that is not what the lesions on my brain look like. However, I still want to know how many lesions I have and where. I still want to see my MRIs. I've had lots. Been in that machine time and time again. During the journey to diagnosis I think I had two or three. Since then I've had at least another four as part of research projects. I am a willing participant in research. It may not help me directly (except for the wonder drug trial) but if it helps medics, scientists, anyone understand this condition better then that has to be good. As well as taking part in research trials I am increasingly involved in other MS related activities and fundraising. For me it is personal.

If you ever hesitate about donating to an MS cause please remember the lesions. Imagine them as part of you. Inside you. On your brain. Imagine there not being a cure. Imagine living every day with the effects of those lesions. You may not be able to take part in research but you can take part in other ways, for example: http://beatms.mssociety.org.uk/netcommunity/toots
Bake a cake, take a picture of it. Make it a pretty one. Email the photo and the recipe and it could be part of the fundraising booklet CakeMumBaked. I will be sending in a recipe. Will you?

Borderline normal

I have sort of become used to blood tests. It seems that whenever I go to the hospital they take blood, and I go often. I sometimes also have to have blood tests at my GP surgery to supplement the ones at the hospital. I dread bumping into one of the MS Specialist Nurses in the supermarket in case they say ‘Oh, by the way, we just need some more blood’ as I head for the check-out.

I recently started taking part in a research study for a new medicine. More blood tests.

Yesterday I was phoned by one of the study doctors to say I needed to come in to the hospital for another blood test. I was only there last week. She had got the blood test results. She said there was nothing for me to worry about. She was the one doing the worrying. She said it was her job to worry and repeated, several times, that I didn’t have to worry. She did. I didn’t – I’m obedient like that.

I dutifully went to the hospital this afternoon for my blood test. I asked the doctor why they needed another blood test, what was wrong with my blood count from last week’s? He explained about my white blood cells. I nearly understood it all.

The MS Trials Nurse told me that I had only been ‘borderline normal’ at the start of the study. Now there has been a drop in one element of my white blood cell count. I need more neutrophils. Put very simply, mainly because that’s how I understand it, neutrophils gobble up infections. I think they are like Pacmans scooting round the maze of the body. I’ve had a virus – flu which turned into a bacterial infection. My little Pacmans have had their work cut out and are depleted in numbers.

I currently aspire to be borderline normal again. Hopefully I’ll exceed that and become normal. I suspect friends may say that’s impossible. We can all dream, can’t we?