Archive for March, 2010

Expected as much..

March 31st, 2010

I ask ,if you were to spend one day as an MS sufferer -would you soon enough change your prospective? Of course you would..

The UK Government’s Official response to the CCSVI procedure being available here in the UK..What did we expect eh?

Read the Government’s response

The Government is aware of Dr Paolo Zamboni’s findings.  However, as this is the only piece of research on the link between CCSVI and MS that is currently available, it is important to approach such findings with caution until a further review of the research has been conducted.

A number of medical advisers to the MS Society have read the papers published by Dr Zamboni, and have heard him lecture on the subject.  The advisers have provided the following statement about the alleged link between MS and CCSVI:

We are not convinced by the evidence that blockages to draining veins from the brain are specific to people with multiple sclerosis, or that this explains the cause of multiple sclerosis at any stage of the condition.

We are all agreed that people with multiple sclerosis are not likely to benefit by treatments that dilate blood vessels and consider these procedures to carry risks with no evidence for benefit.

The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS.

The Government is determined to make the UK the best place in the world for health research, development and innovation and to invest its substantial health research budget in the best possible way.

The Government’s research strategy ‘Best Research for Best Health’ is resulting in an expansion of the Department’s research programmes and in significant new funding opportunities for health research.  The National Institute for Health Research programmes support high quality research of relevance and in areas of high priority to patients and the NHS.

Neverending story

March 21st, 2010

I think I want to try LDN  ( Low Dose Naltrexone ) before I jump onto the Rebif.

The success rate is pretty good.I am not looking for a ‘miracle cure’, I merely want to have a slightly better quality of life , I want to be able to move around my home in an easier manner. I have had a diagnoses of MS for nearly 11 years and I have been drug free for the same time.

I have relapse/remitting MS which means that it comes and goes, I have good days and not so good days. I want something to help me stave off the progression from relapse/remitting to secondary progressive.

By nature MS is a progressive illness- I will hit the wall eventually and when that day comes I will admit that it is the end and sit in a wheelchair like a good girl (maybe) but I would like to hold it off for as long as I possibly can-is there anything wrong with that?

I think not,

March 16th, 2010

An old school friend of mine contacted me today via email. Michelle B, I haven’t heard from her in oh about 15 years? I know she has two children, a boy and a girl and other than that she still lives in our old neighbourhood that’s about it.. We went to primary school together, that is how long we go back. It’s weird though, anyway she contacted me to tell me that she and Darren (obviously the partner ) were getting married. Great I thought to myself- so why exactly after 15 odd years was she contacting me to tell me this?

She wanted me to be a bridesmaid.. Yeah, funny hey? I mean has she not made any new friends since the last time we laid eyes on each other? I mean c’mon- I didn’t even wear a wedding dress to my own wedding let alone me being a bridesmaid!

I that that maybe she’d wanted to get her hands on cheap invitations or something, seeing that I do paper crafts and such, but a bridesmaid?! That really knocked me for six to be honest, I could not get over the small fact that it has been 15 years if not longer since we have even met face to face. I’ll call her and let her know that I appreciate it and all that but I won’t be accepting. I mean I am flattered ( I think) that she thought of me but uhhh- I don’t think so shells!