Tysabri Tuesday

I saw the Neurologist yesterday for the follow up appointment following the one in Jan where we discussed Tysabri and he ordered the MRI scan. The appointment didn't hold any surprises because I had already received a letter about the scan results.
They had only done a scan of my brain, and a lot of the symptoms I've had in recent relapses have been synonymous with spinal lesions, so I was worried they wouldn't find anything at all thus making me not eligible for Tysabri. However they did find one small enhancing lesion. Apparently the radiologist had written up the report saying that there was no new lesions but when it was looked at by two neurologists they both agreed that there was a new lesion. He showed us the scan and the lesion was in a very similar place to an old one, but when he flicked between the two screens you could see it had moved ever so slightly.
I had always wondered why exactly MS was so hard to diagnose. I mean, I get that it is hard to get to the point of seeing a neurologist and having a MRI, but I've always thought that surely once you get the MRI and it shows lesions, it is obvious right? Now I see where I was wrong in thinking that. This lesion, although obvious, was open to interpretation and the radiologist obviously had different views to the neurologists. If this had been my first relapse, it may well not have led even to a diagnosis of CIS. As it was, my very first scan was so covered in lesions it left no one in any doubt of the cause. For this I do feel lucky, to have had such a BAM first relapse, meant that I didn't have that huge road to diagnosis that so many unfortunately do.
It was hard enough waiting the 6months between the first relapse and diagnosis, I can't imagine how hard it must be having to be in limbo land for years and years.

In the bumph they had given me to read about Tysabri, it said that you are automatically referred to a dermatologist to check you don't have any skin cancers present, because Tysabri has been linked to an increase in that condition. I asked him about that, and he said this was no longer routine, and that it was at the start when 'people were scared about it'. I showed him a mole on my back that I've had concerns about for a while, and he decided to refer me anyway, just to be on the safe side.

He also confirmed I am negative for the JC virus, which is very good news, meaning my risk of PML is minimal. He wrote 1 in 1000 on the consent form, but it really is much much lower, only a theoretical risk for if I contract the virus whilst on the treatment, which in itself would be unusual as an adult, and even if I did, would take several years to develop to PML.

I also asked him about vitamin D, if it is okay to be taking it without a blood test to show I am deficient. He said a blood test would be a difficult thing anyway because what is deficient? He said if you took a cross section of people in Cambridge and tested them all, and took the average, it wouldn't mean anything because it is quite likely most people this far from the equator are all deficient. He said that he would think any dose up to 5000iu's a day would be safe. I had been taking only 800! He said that 5000 is equivalent to just 20minutes in the sun, that really surprised me. After, we were wondering just how much of your body has to be in the sun for that 20minutes to absorb 5000iu's?! Is that just your face, or topless sunbathing? Surely it makes a difference?!


Anyhow, the upshot of the appointment was that I can start Tysabri this Tuesday! I am excited, I am hopeful and I am nervous.
Nervous more of the procedure itself, having the cannula fitted and all that hassle with finding a vein. Sitting in the discharge lounge of the hospital with my gross arms on show. (The neuro ward has been shut for months because the lifts are broken, so now its various functions are dispersed around the hospital in 'temporary' locations. I suspect they have no money to fix the lift, and that perhaps in April when the new financial year kicks in, it'll get fixed. Because, really, can it take 9months to fix a lift?!!)

I am not thinking too much about what if Tysabri doesn't work. Of course I have in my head an awareness of other options and am not in total denial about the possibility of it not working, however I feel that for now a positive attitude is for the best.
It will work, and I will not have any more relapses for a very long time.