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.

That wonderful word, normal.

What a wonderfully diverse disease MS is. Just when you think you have a handle on what is going on with your particular brand, it throws you another surprise into the mix.

That is why I am so grateful for, and in some ways scared  by, what my CCSVI treatment has done for me.

What brought this to a head was a combination of entering my plus five months data on CCSVI Tracking   and emails from the clinic in Poland asking about my six month follow up with the doctors there. I sometimes wonder where the time has gone, and then realise it has gone in both living a normal life (wonderful word that, normal) and in waiting for the other shoe to drop.

I am back at work, although not full time. I drive myself about. I can walk to the local shop and back without needing to sleep for 6 hours to recover. I am exercising at a gym, under the watchful eye of my wonderful personal trainer. I feel like I have my life back.

But I still have those dratted holes in my brain, and some intentional tremor in my left hand and leg. Enough to remind me that the MonSter may not have released its grip on me entirely. And I still do the MS person's check on waking - which bits are/are not working today.

To be given a gift , like I have, is to live with the fear that tomorrow may be the day it is all taken away again. It is not placebo, the effects have lasted too long for that. But it may just be the longest and best remission of my life. Amazing how many other people experience remission, starting on that particular operating table.


So tomorrow morning, I will wake up and face the day. All the more thankful for what I have, because I know what it is to lose it.

Women and MS

Currently the diagnosis rate for women with MS is about twice that of men, although 100 years ago it was about even. So why this change?

One factor is the rapid decline in maternal mortality. Researchers estimated the number of women dying around the world in ,2008, during or shortly after pregnancy, to be 342,900, down from 526,300 in 1980. The historical level was about 1 in 100 births.

As MS tends to be diagnosed later in life, how many women died before their disease became apparent?

For those of us interested in CCSVI, it is interesting to note that the rate of  Chronic Venous Disease (CVD) is also twice as high in women as in men.


Here is Dr. Ferlini's genetic study, where she found CCSVI and MS share copy number variations on the same HLA locus region that is associated with MS.
http://www.fondazionehilarescere.org/pdf/ferlini-etal-2010-final.pdf

Maybe someone will join up the dots one day............................