This Is MS Multiple Sclerosis Community: Knowledge & Support

I am a Brit who resides in Finland and my wife who is a Finn has RRMS.

I feel as though Im banging my head against a brick wall over here. The Finns as a people are fairly Passive and have no culture of protest or positive societal action. Now, when a call to action is required Im looked upon as a piece of shit.
Typical responses include, "we dont do things that way over here" or "Everything gets sorted with time" its like, you are no Finn so how could you possibly understand the way things are done here. We have done very well for ourselves since independence in 1917, so therefore your call for action does not fit with our model of success.

There is only a very luke warm response to CCSVI in the Finnish MS forums. Why cant we just get together and demand action be taken on this issue, Shit I just feel like screaming a the world.

I a planning to walk the streets of Helsinki with a petition aimed a the medical and political bodies demanding quick and effective research into CCSVI I cannot stand by and watch as my wife slips away from me.

The frustration is overbearing!!!!!!


Peter[/b]

Peter, I understand your frustration - believe me. You are right, that Finns don't easily go protesting or demanding loudly. I quess we are somewhat "shy" people, and demanding things goes maybe a bit different way -- letters, mails, contacting, media, etc..

To be honest (this may sound weird) but Im feeling positive how CCSVI things are at the moment.. It has been even better than I though some time ago. Many people has taken contacts to biggest university hospital and that has had effect.. to my knowledge they are going to start researching this. Of course there is always possibility that things happen slowly or there will be obstacles. Then its time to mach on the streets.. or use media, it is very effective way to fight for rights in Finland, and we will use media - if given promises about research don't come true. So Peter, we are same side - again, I understand the pain, we are in a same boat.

Its just so slow. Anu has developed a vision problem in her right eye over the past few days and may have to go for the cortisone treatment tomorrow. This process is just too slow.


Peter

So sorry to hear that Peter, and now I understand better your situation and frustration. Luckily MS is usually slow disease, and there are these nasty surprises sometimes. I'll write to Anu soon in Finnish forum. Hang in there, everything will be okay.. with time.

I just feel hopeless and useless at times like this, Im sure you have felt this yourself. These feelings usually lead to frustration, desperation and anger. Thanks for the replies Erkki.


Peter

I know those feelings. Since my wife got her dx 3 yrs ago, I have been reading lots of research --> things that you can do yourself.. and found webpage by Ashton Embry. So we changed our way of eating totally with best-bet-diet + some supplements. I quess it has worked very well so far - it doesn't fix ccsvi, but effects to many things: oxidative-stress, inflammation, immunesystem, etc. Vitamin d-levels --> very important, should be high enough. Sorry, I don't wanna sound like preacher, but all this has worked good for us - and all Ashton's ideas are based on science. Very good reading.

I am on the Best bet diet too. I think it is also important (something I have forgotten to do many times) is not just to cut foods out but to add the important ones in! (Greens, omega 3's, variety of different colour fruits and veg etc) I do feel more energy when I stick to my diet and I feel more positive. I think it is so important to feel like you are providing your body with all the nutrients it needs, it makes you feel less helpless.

Peter,

Excuse the direct question, not very British of me but are you a comfortably off man?

Any chance you could just go to Stanford?

Not ideal I know and mate, I feel your pain and frustration.

I wish I could help in some way, it drives me crazy too and Mel's been lucky enough to be done.

How about back in the UK, rattle some cages there and do a bit of medical tourism, shit if half of the world can why not you? Presume you've paid into NHS for years anyway.

Keep at it.

Jamie

I know the frustration, I've been advocating for research into LDN since 2004. But that is an expensive drug, so it really falls on deaf ears with the MS treatment realm dominated by the expensive designer drugs (even though they don't seem to work).

Please look at http://www.ms-mri.com
Consider the approach proposed by Dr Haake, that completely by-passes the neurologists and their drugs: Take the MS research protocol Haake outlines straight to intervential radilogists, let them compile white papers on treated cases, and substitute this proof for years of research. As a by-product, lives get saved immediately. Dr Haake is even sharing the software needed to do the more sophisticated imaging.