Amazing video

I saw this clip on a friend's blog, Enjoying the Ride, (see links below at the side) and thought it was worth sharing with you:

http://www.ted.com/talks/view/id/1104

Downside to treatment?

I guess this is a downside, but one I'll happily live with for all the gains I've had.

My hay fever is back. Every spring, when the daffodils began to flower, I would get snuffly and snotty. Then MS bit, and the hayfever went away. Suppose my immune system had bigger fish to fry. But this spring, lo and behold the hayfever is back along with the daffodils.

Perhaps my immune system has given up on attacking my nerves for a while.

This does sit well with some of the more recent research done, and if more widely experienced, could perhaps be another piece in the jigsaw that is MS. I'm not going to quote all the references in here - there are plenty in the side pages, and it would take too long, but if someone needs some guidance where to look, leave me a question in the comments, and I'll help you out.

Basically, the immune activity kicks in after the lesions have started to form, as a result of hypoperfusion, iron deposition and cell death in the CNS. This in turn is triggered by the blockages in the veins draining the brain and spinal chord. Remove the blockages and the hypoperfusion goes away, inflammation and immune activity in those new areas of damage also cease.

So while treating CCSVI does not remyelinate pre-existing areas of damage, and does not remove long term symptoms experienced by PWMS, it does holt damage being done now, which may not show up as full blown lesions on MRI, and so those with active disease and in the relatively early stages should get the most relief.

Is hayfever a downside then? Or a sign that , at least for now, the damage in my brain has stopped?

I would love to know.

how fragile is confidence

It is now six months since I had my procedure, and life is pretty good. MS still reminds me that is has not given up on me; I have TN (trigeminal neuralgia) unless I take my meds regularly, and my left hand and foot occasionally play up.

But overall, the difference is still incredible. From considering wheelchairs to being able to walk without a cane. Getting psyched up to never being able to work again, to coping with a 25 hour week.

So it was a bit of a shock to the system when I had a fall at the weekend. Not as a direct consequence of MS, but I caught my feet in a cable on the floor as I turned, and hit the deck like someone poleaxed.

 So now my body is bruised and battered, but not as much as my confidence. Even now waves of misery and uncertainty pass over me, as I fear that I have lost all that I have gained. Logically, I know that this was the type of fall anyone could have had, but what has logic ever got to do with the fears that lurk in the soul?

When people I know go for the procedure

Holding my breath again this week and crossing every toe and finger as another person I know goes for venoplasty. It seems about two thirds see improvement, sometimes dramatic, as I did, and can be seen in the many YouTube videos across the net.

But what about the other third? I must say I am struck with a form of guilt when I hear their stories. Here I am, so much better than before, and they get nothing. I hope at least that this information will finally crack the enigma that we call MS.

Maybe this is not just one disease, with one set of causes, but a number of different ones, that result in similar signs and symptoms. Getting a diagnosis of MS can be a long and drawn out process for some, as all the alternatives are checked and discarded. For others it seems swift and relatively straight forward. For some, the diagnosis is never clear or straightforward.

So each time I hear of someone I know undergoing CCSVI investigation and treatment, I hope they have the same form of MS as me and all those other responders out there. But sometimes it doesn't work, and all they are left with is hope.

Upset and disappointed

Back in November I took part in a recording for a BBC Radio programme about CCSVI. It was never broadcast. I was annoyed, but ce la vie. I felt it was a shame because there were some doctors interviewed to give a balanced and scientific basis to both sides of the argument.

Today I find out why. On the BBC News website is an announcement of a forthcoming programme about CCSVI labelled Concerns about Controversial MS Treatment. 

It is obviously not intended to be balanced, as is clear from the language used. Doctors "not licenced to practice medicine", another " reported to the doctors' watchdog, the General Medical Council".

Stents are described as little metal tubes and any improvements are "apparent" or "placebo". An "undercover reporter" is scanned and is diagnosed with CCSVI. This is intended to discredit, but shows lack of reasearch by the programme's staff, as nowhere is it claimed that CCSVI is only  found in MS patients, rather that it is found at a signifiantly higher percentage than in the rest of the population.


Meanwhile Biogen report 10 more cases of PML and four more deaths from the approved drug Tysabri, between January 7th and February 2nd.

I had hoped for better from the BBC. This is tabloid journalism, poorly researched and out for a juicy headline.