I saw the interview on CBC news last night with a doc from teh MS society and thought of you Sighs.

he was interested but cautious.  He stated that many times a new hopeful treatment is investigated that doesn't pan out.  But also interested in the idea.

Of course the next stage is large scale trials and studies.

It is something to keep fingers crossed over though.

I was surprised to hear that Canada has the highest, or one of the highest incidence of MS.  He postulated that they wonder about Vit D and lack of sun.

anyway, little discoveries like this make me optimistic that some of our debilitating diseases will one day be treatable/curable

I watched it on W5 and I think it is absolutely amazing.

It's also a love story because Dr. Zamboni's wife had MS.

 I've heard about this and think that to say this is the cause of MS is going a little far.  It sounds like this might be a reasonable treatment, or even be used to prevent/prolong the development of MS in people if it is known to run in their family.

To say that MS is not an autoimmune disease at this point is going to far in my opinion though.  It's possible that the iron contributes to the problem, but I do not think that would be the cause itself.  MS tends to affect women more frequently than men, but women tend to have lower iron levels, I don't know about differences with brain levels though.  If all factors were the same, and iron was the problem alone, I would expect that men would develop symptoms at a younger age than women.

Hopefully the treatment does prove to be useful, and I think it would be great if they could screen people who are at a greater risk and treat them if they do show narrow blood vessels before they experience symptoms.

I'm keeping my fingers and toes crossed that he's on to something.  It was hard not to feel psyched hearing the people who underwent treatment to widen the blood vessels to their brain state that they so far have had no flare ups.

Any new finding offering such promising explanation and with it possibility, treatment options and perhaps even a cure for MS is cause for excitement and hope. And even if this narrow blood vessel discovery isn't the case for all with MS, the fact that medical researchers continue to explore and seek answers is cause for hope. And my fingers and toes are crossed too sighsnootles!

all i can think of today is the claim that this doctor made...

he said that this treatment alleviated the chronic fatigue that is associated with MS, as well as the chronic pain.

i am SO TIRED so often, and my muscles just ache sometimes.  all i can think of is man, it would be so great to have enough energy to run around and play with the kids again...

i'm in tears just thinking about that.  nobody can possibly understand how HARD it is to have MS, and the chronic fatigue...  i have heard so many people say things like how i'm just lazy, or i should just move around more or whatever.

don't you think i WANT TO??  WHAT GOOD COMES OUT OF ME LYING AROUND ALL THE TIME?? 

I WANT TO MOVE, I WANT TO HAVE ENERGY... I WANT TO LOOK FORWARD TO LIFE AND NOT FANTASIZE ABOUT JUST LAYING DOWN AND NEVER WAKING UP AGAIN...

this guy has said that if i just get my neck cleaned up, i will have that energy back again.

i dont' know what to think... am i just setting myself up for disappointment if i actually start to BELIEVE???

  I saw a brief interview on tv too about this though can't remember which channel and did think of you Sigh as well as several other people I know personally who have it.  I can understand that it's hard not to want to believe and just hope.  My mother who has another chronic condition has been through many disappointments over the years.    What I did appreciate about the interview was the caution that the gentlemen that went through this treatment expressed.  Even though he said his experience is so far positive his caution at proclaiming anything was very apparent.  I think that is a good thing as I've seen so many 'its a cure, it's cure' excitement proclimation in the past about chronic diseases that just haven't panned out.  Makes me trust the research into this more then I would if he'd just come out and proclaimed.

  Is it possible to take a cue from how he's seems to be dealing with it and be cautiously hopeful?   Gah, I'm not saying that completely right. Words are failing me here.  So sorry. I

sighsnootles,

I get ya.  When you deal with "it" whatever "it" is and find a way to endure or get through or whatever... no matter how gut wrenching, depressing, painful.... it seems too much to willing get add another disappointment by believing or hoping. Heck, it is enough dealing with it status quo, let alone a big let down by daring to dream... Yeah, I get that.

Perhaps, a more resigned approach? "Maybe at some point I would get my neck checked, but just to see".... or "I would try it, but not with any magic cure idea or anything." It may help slow down flare ups and not be a cure, just a treatment option or a slowing of the progression... but on that front any news is good news. Isn't it?

I also get the problems with "invisible" illnesses or "unseen" disabilities and having to deal with people's stupidity.

.

I heard a guy today interviewed and he said intensive studies will be done right away scanning volunteers to determine if blood flow is an issue.  The Ontario site is McMaster University, also Saskatoon and Edmonto and possibly Vancouver.  More might come.

he said they will be looking for volunteers to get scanned between 20 - 50.

It sounds exciting for sure and what a great break through if it panns out

I was just talking about this with the mother of one of the guys I support at work.  Her husband was diagnosed with MS about two years ago.

She's excited and wanting to get him into a clinical trial.

Sigh - I also have my fingers crossed for you. I also suffer from fatique from an autoimmune disorder and no one can understand how severe or disabling it can be without experencing it. And then we also have all the other problems that go with our own particular disease to deal with. I'm hoping that this is the break through that you and all those affecting by this disabling condition are hoping for.

My sister's MS is quite severe, she can walk very little. She has been participating in a drug trial and she has not worsened since starting this drug (she has been taking it well over a year). Having seen how this has affected my sister, I do hope that this new finding pans out. There are many like you, Sigh, and my sister who need real relief.

I saw a couple of people interviewed who have been "cured" by this doctor's treatment and whose deterioration was halted and whose symptoms were ameliorated or eliminated.  It was on the CBC this morning I think.  This would be very good new for any person suffering from MS.

Sigh, I think I have a decent understanding of what it's like to have MS after dealing with health problems this year (for a while, I started be concerned that I did have MS).  I hope this treatment will work for you!

I agree with Stevie, try to not get too excited.  Think of it more as a drug that may or may not help.  I have some concerns with people going to the media with their research before publishing their study, and your reaction is one of those concerns.

Just to clarify some of the science behind this - even if this theory is correct, we are still dealing with an autoimmune problem here.  There is definitely an autoimmune attack on the insulating cells (called schwann cells) that wrap around nerve cells. What the theory points to is a reason why this may be happening (ie abnormal entry of iron into the central nervous system).

[Chemgal - as I understand it, the theory isn't so much based on plasma iron levels as it is on venous narrowing and damage to the blood-brain barrier that allows too much iron into the brain (if so, this is probably produces free radical damage, which as a chemist you would know that excess iron is capable of doing - think Fenton reaction).  Your point about approaching the media first is well taken - studies like this are often small, and don't elucidate whether the test cases are exceptions or whether everyone with MS will respond similarly. For that, a larger study is needed.]

There could still be gender-related differences from that standpoint (i.e women may be more susceptible to the narrowning, and therefore to MS). And that in turn could also be related to Vitamin D levels (which is involved with a large # of genes, including those dealing with cell division which normally would be involved in repair and healing). The theory at this point largely doesn't allow us to predict who will develop MS (ie. who will develop the narrowing) as much as it could provide an avenue for treatment of those who already have MS in combination with the venous narrowing as described.  

 Spiritbear, I agree with many of your points.  The first time I posted I kept a lot of thoughts to myself to avoid a long post, but you've encouraged me to bring them out.

On the program i saw (W5 maybe), the doctor said that he believed that MS was not an autoimmune disease, or at least that is what I heard with his accent.

If the narrowing really is the cause, and the autoimmune part is just a response to that, and all other factors being equal I would expect men to be diagnosed earlier than women, even if more women have the condition.  Their higher iron levels in the blood should correspond to the iron level in the brain increasing faster.  I don't know if the factors are equal though, the extent of the narrowing might be greater in women, the permeability to iron in the brains of women might be greater, or women might just end up having a faster immune response.  There's also the diagnosis aspect, since more women have MS they might also get diagnosed faster than men, which might even out the average age of diagnosis between the two groups.  Or maybe men do get diagnosed at a younger age, and I've just never heard it.

A study that would be interesting would be to screen those who have a history of MS in the their families to see if they do have narrowing and then treat those that do.  Compare the treated group to a control group for many years and does the MS prevalence vary between them.  Of course, this would take a long time to do.  There's also the risk to look at, it is not known if someone who gets the surgery would develop MS without it and surgery always carried some risk.

It's possible that there's just a correlation with MS and narrow veins, and the treatment isn't useful at all.  It's also possible that the disease has already begun, and the narrowing is just a symptom of this (and may lead to symptoms getting worse).

Wow, is anyone actually going to read my entire post? lol Thanks for letting me ramble!

I read it.

And I was going to also post that the folks behind the study are saying they don't think MS is autoimmune.

they coudl certainly be wrong.

They coudl certainly have treated a very few who just have this additional problem

and it is always difficult to know which is the chicken and which is the egg when it comes to causes verses symptoms.

hopefully if this US led study looking at 1000's of patients across dozens of centers in the USA and Canada, finds differently it may cause a huge shake up.

for years scientists appear to have attempt to cure an autoimmune disease.

If the root cause is different in at least some patients it will cause some dynamic new and exciting research and hopefully effective treatments and cures.

CBC Nova Scotia interviewed a man (I'd say early 40's) who is going to liquidate his assets and go to Italy for the treatment.  I pray he will be well as a result.  Of course MSI will not cover an experiemental treatment.

Here's the W5 interview and the video of the show. FYI

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5

This is interesting. I wonder if this potential discovery could be extended to Chronic Fatigue in general? I know that if I didn't have that, I would have a much better time searching for income if I just had to deal with the chronic pain of fibro.

All in all, this is good news as one potential discovery always leads to new and hopefully exciting things

I thought of you too sighsnootles when I saw this on TV, along with a good friend who has MS too.  It's always interesting to see how the medical field responds to those who come up with radical new approaches.   I recall reading somewhere long ago about  the skepticism & derision heaped upon those who suggested washing hands and instruments before delivering babies might improve the outcomes for mothers and their babies.   Just a no brainer for us now ... but an outlandish suggestion in its time.

Seeing as healthcare professionals are always quick to rubbish any potential advances in the treatment of MS it's no surprise that it's happening with this new discovery. It would appear that Dr Zamboni has hit on the (possible) real reason why MS occurs at all. The maxim here is "keep it simple" and it doesn't get any simpler than this.

He's quite clear on the fact that blood not draining properly from the brain causes a buid-up of iron deposits around the lesion sites which then causes the immune system to kick in. It's at that point that the myelin is destroyed by the immune system - not the other way around!

Makes sense to me. And after living with MS for 15 years, four years of depression with Avonex, no help whatsoever from my neurologist (this is the UK after all), one year on LDN which makes me feel great 24/7 but my condition has gotten worse (contrary to what Dr.Bihari may allege) - what is there to lose?

If I were given the chance to undergo this treatment I'd do it right now. If it works, great, if it dosn't, I've lost nothing. All the nonsense spouted about "be cautious", "we have to conduct more studies" etc. is just typical of a medical profession which doesn't really care (except on extremely rare occasions) as long as they're receiving their pay check each month. Meanwhile I'm, along with all other sufferers, slowly deteriorating while that bunch of wasters sit around discussing the weather.

Sounds rather angry eh? If you're not afflicted with MS you wouldn't understand.

My suggestion - get your collective fingers out and start doing something proactive for once instead of kowtowing to the pharmaceutical companies.

I'd rather know that I tried instead of dying wondering.

I haven't hear scepticism or say this is rubbish.

what I have heard in all the interviews and articles i have read is that this is a potentail great discovery that needs to be researched on a larger scale.

That there is potential for many people to get relief this way.

that by doing testing of cerebral blood flow on thousands and treating those that have blockages as they find them alot of info will be uncovered.

I haven't heard any MS scientists saying "rubbish", in fact to me they sound downright excited about the propects of a new way of looking at MS.

cookie, i have MS as well, so i think i can understand where you are coming from.

however, i also have a degree in nursing, so i have a unique perspective here.

what you are seeing from the medical community is NOT a bunch of guys sitting around talking about the weather while we all deteriorate... it is a very cautiously optimistic response from a group who has see MANY MANY 'cures for MS!!' come and go, and is simply being cautious before they get out the banners and plan the parades.  here in canada, neurologists are beginning the testing process to attempt to duplicate zambonis work.  which is EXACTLY what they should be doing.

i think that one thing that perhaps you are missing here is that, far from a 'simple treatment',  angioplasty is a HUGE procedure... its not just a skip through the park.  the complications are massive... having worked in a hospital for many years, i can tell you that i heard MANY 'code red' calls (cardiac arrest)  to the angioplasty labs.  dying on the table is a very real possibility, and the potential for strokes is tremendous.  so hey, your MS might be cured, but you had a stroke in the lab and now your left side is completely paralyzed. 

please, cookie... i've had the run around as bad as the next person when it came to diagnosis and treatment of my MS.  my neurologist right now, although BRILLIANT, has the bedside manner of a turnip, and is sometimes difficult to deal with.  i am picking up what you are putting down here.  but i can tell you that, far from 'lining their pockets' and 'sitting around talking about the weather', the medical community is very much moving forward on this one. 

I think the other thing to be cautious about would be "who" can receive this treatment. It appears to only benefit those that are at a certain stage of the disease. More advanced cases may not be candidates for this procedure although I haven't heard if the doctor had attempted this procedure on someone that has deteriorated substantially. Does anyone know? It sounds like he's just been focusing on recently diagnosed cases.

On the plus side - I do know that some medical studies are stopped short of their target numbers when the results are overwhelmingly positive - the research & medical community, once convinced, will blast ahead with action.  The opposite is also true - when results are coming up overwhelmingly dismally, then studies may also be terminated. 

So personally, I'm hoping for great outcomes to show early & the research to be translated into restorative action for many who have MS.  Waiting is just so very hard.

Oops, I also meant to say "Hello Cookie31"  I think I've seen a few posts from you before, but didn't pick up your UK accent   Nice to join hands with you across the ocean.  Sorry to hear about the difficulties you've been experiencing ... 15 years must seem like an endless amount of time. 

 The correlation is there, but it doesn't look like it's a cause-effect for MS in general.

Based on preliminary studies, slightly more that half of people with MS also had CCSVI (the narrow blood vessels in the neck) whereas about 1/4 of the general population had this.  If people with borderline MS symptoms were omitted, then 62.5% had it.

http://www.buffalo.edu/news/10937

Personally, I get a little annoyed when preliminary results get reported to the media, but I don't see it stopping anytime soon.  The media is bad enough when it comes to explaining many things properly, let alone when a study isn't even completed.  These results do look pretty good from what I can tell though.

It looks like this might be a good treatment for some people with MS, but it doesn't appear that it will treat or prevent all or most cases.

McMaster University has taken Zamboni's work seriously enough to begin their own study.

http://www.digitaljournal.com/article/287304

when something like this guys claims hit the media with as big a mushroom cloud as dr. zambonis did, places like mcmaster HAVE to do their own studies.

but remember, just because they are studying it doesn't mean that they support it or agree with it.

science is based on this idea... zamboni makes a hypothesis, and then other scientist try and duplicate it and tear his work apart.