This Is MS Multiple Sclerosis Knowledge & Support Community

Hey guys and gals!

My MS really started to kick in because of stress too. First it was losing my dog, my job, and my husbands business going under. I was out of work for over a year. When I did get a job, within a month I started to get worse. I've been trying to get disabilty because I am not curently working, but they don't make it easy. More stess! but I am just trying to let it roll off my back.
The last time I saw my neuro, I gave hime the info on CCSVI and Dr. Zamboni's work. He didn't even look at it. He handed it over to an intern, who prceeded to quickly look it over. When my neuro asked what it was about, the intern said it was about the veins. My doctor didn't even read it. He gave it back to me! What a d#!?*k!

So, I've taken it upon myself to seek treatment, and I've been trying to help others find help as well. Why does it have to be so difficult? I too want to start a CCSVI/Liberation Treatment revolution.

I am seeing an IR/Vascular surgeon today. But it took me months to find him, and I got the information from this web site. It rocks!

Everyone, at the end of the day we have to do what the neuros do- rely on our community.

Not all neuros are bad- or even apathetic. They are simply stuck in a point of reference that they can't seem to shake loose. Be it due to money, pride, or just plain ignorance, I believe that only an overwhelming amount of evidence will start to turn the tide there.

But here is the good news- we are not a group of spineless, weak, sad people that follow orders like well-trained dogs. To live with this disease takes an incredible amount of strength; to operate every day with the cloud of a relapse without warning over your head takes resilience. We ARE the ones with pride. We have TOO MUCH PRIDE to just sign over our lives to this disease without a fight.

We will all support each other- so long as we stay the strong, resilient group that we always have been.

BooBear wrote:Everyone, at the end of the day we have to do what the neuros do- rely on our community.

Not all neuros are bad- or even apathetic. They are simply stuck in a point of reference that they can't seem to shake loose. Be it due to money, pride, or just plain ignorance, I believe that only an overwhelming amount of evidence will start to turn the tide there.

But here is the good news- we are not a group of spineless, weak, sad people that follow orders like well-trained dogs. To live with this disease takes an incredible amount of strength; to operate every day with the cloud of a relapse without warning over your head takes resilience. We ARE the ones with pride. We have TOO MUCH PRIDE to just sign over our lives to this disease without a fight.

We will all support each other- so long as we stay the strong, resilient group that we always have been.

BooBear, ditto on that. My own perspective on this disease is like a house
on fire. Even thou this is my wife's disease i feel it's mine too. I want to learn as much as I can.

Now how I relate this disease to a house fire is kind of like this. I see my
wife in the burning building and I'm on the outside wanting to do everything I can to help. The first fire truck arrives (CRAB drugs)
to help extinguish the flames. The second alarm is called in and I can
see the second fire truck arriving (CCSVI). So should I dismiss it
as of no help and turn it back to the station..?? Answer: "No!" I would
rather try something than nothing. At least I can feel comfortable with
the decisions I made knowing that I tried. I just wish neuro's would see it that way. This might be a corney example but this is how I feel.

MrSuccess wrote:please take note : the first guest speaker at Dr. Scalifani's gathering is
Dr. Salvi who is a neurologist and is Dr. Zamboni's main partner in the Liberation discovery.

The Buffalo study is being conducted by Dr. Zivadinov and Dr. Weinstock-Guttman .... BOTH .... neurologists.

May I suggest that each person - neurologist - be evaluated on a individual basis . ........ Not as a group .....

I am all too familiar with the experiences that pwMS report here at TIMS that they have with their neurologists. Some .....very bad.

Better to focus and promote the more open minded neurologists.





Mr. Success

That's great, Mr. Success - and I believe there are brilliant neurologists out there, like Dr. Salvi and some of the ones I've heard about in New York and some of the larger metropolitan areas.

Unfortunately in my entire state there are NONE. I live in Hawaii, and overall in every field of medicine not just neurology, Hawaii has a hard time keeping good doctors & these are just some of the reasons:

1. Malpractice insurance for doctors in Hawaii is among the highest (if not THE highest in the United States).

2. Many come here and get homesick - so they don't stay long.

3. The cost of living here is extremely high, so another reason they just can't afford it.

4. Many look at Hawaii as a resort, not a profession

5. Many get locked into clinics that force them to double and triple book so they are entirely overstressed and just leave because the working conditions are better in other states.

I've heard doctors tell me this, I'm not making it up. I have a friend who is a doctor (an audiologist) and I worry to death about her because she is so devoted to her patients she works 7 days a week.

The doctors that do tend to stay here are apathetic, often can't keep up with new discoveries (like CCSVI), unscrupulous (especially chiropractors), or just plain exhausted. Because we're so far away, they can't keep up with symposiums and new training procedures.

So when I say there are no good neurologists here - something one of my general practitioners told me himself - I'm not making it up. Unfortunately a lot of the doctors here have humongous egos - one doctor told me without even looking at my MRIs that I'm depressed and all my problems could be solved with anti-depressants. That's how backward Hawaii is.

My ENT developed cancer - did he get treated in Hawaii? No he flew to the mainland to get a specialist.

So, yes, I know there are good neurologists. But they're not here & I don't have the connections or the money to go to the mainland to find a good one. I'd love to see Dr. Salvi - but that's not possible.

All I can do is relate my experience, and as the psychiatrist R D Laing said (paraphrased): to deny someone's experience is to kill them.

Well, the lack of quality treatment has led to the early deaths of many people I know here in Hawaii. Why do I stay? Because this is where my husband wants to be, where his profession is, and we tried once to leave but it was a disaster. So for now I'm stuck with this. That's why I'm desperately searching for an IR on the mainland to treat me as there are none here, and all the neurologists are dismissing CCSVI in this entire state.

This may be unique to Hawaii, but it is what it is. And no one who doesn't live knows what patients go through who have serious illnesses in Hawaii. I can tell you from personal experience, this is FAR from PARADISE.

I feel I must respond again to more smoke and mirrors from the CMA. It is not just neurologists.

http://www.thisisms.com/ftopic-12724-0- ... rasc-.html

This was my original response, before the article was published.

Perhaps they feel immune since the active lawsuit is a human rights one. But I think it is the expert doctors and specialists on whom governments depend for accurate advice (like the MS Society, the neurology association, and the CMA) who have not only shown no leadership in helping MS patients get CCSVI treatment but have deliberately opposed it.

They are the representatives of large groups of people. These large groups have organizations which have very very deep pockets, and feel entirely immune from the law. But it is these people, your doctors, sworn to do you no harm, who are doing the most to oppose you. They feel immune, and they may be right. But it is their own reputations they are risking.

The next time your doctor tells you something, will you believe it?

1eye, you hit it on the head. The issue we are dealing with is a breach of trust.

Our doctors encourage open discussion and honesty. When we try to engage in an honest dialogue, we are frustrated by those doctors that suddenly shut down. When we read all the studies for ourselves, view the "anecdotal" evidence for ourselves and question the effectiveness of the treatments we have subjected ourselves to for years, the conversation can become standoffish or even adversarial.

It is not supposed to be this way.

Our advocates in the Societies have shown their true colors as well, bending only slightly to accommodate our cries for action- using monies that WE donate, our FAMILIES donate, our FRIENDS donate to fund studies to DISPROVE the theory from doctors that have openly called this a hoax. That is advocacy I could expect from a prosecuting attorney if I was on the defense- not in my best interest!

That's why we have to continue our vigilance for ourselves and our community. We can't trust that anyone else will do it for us.

aloha selkie - thank you for taking the time to give us the run down on the conditions you are facing in Hawaii. It sure sounds discouraging .

I suppose many living state side .... in small towns .... understand your plight. But I am certain there are many incredible doctors practicing in smaller or remote communities . Doctors use the Internet big time.

So the playing field should be level .

Any chance you can see Dr. Dake in Stanford ? [ yes .. I know his specialty ]

You might have to bypass the Neuro community and get yourself evaluated for CCSVI .........

As I said on my post ... not all Neuro's are resisting the new idea .....

You know what I find funny ? When the Neurology field makes statements about how dangerous it is to enter veins and open stenosis' ...... and they would know this how ? ......... Almost every IR and such ..... stays clear of offering any opinions of the Neurology world ....... but the Neuro's seem to have no problem offering their two cents ..... in a field they have no business in or understand or can actually function in .

What nerve.

There is so much positive and good news regarding CCSVI ...... it just has to expand to Hawaii ......

Aloha



Mr. Success

MrSuccess wrote:aloha selkie - thank you for taking the time to give us the run down on the conditions you are facing in Hawaii. It sure sounds discouraging .

I suppose many living state side .... in small towns .... understand your plight. But I am certain there are many incredible doctors practicing in smaller or remote communities . Doctors use the Internet big time.

So the playing field should be level .

Any chance you can see Dr. Dake in Stanford ? [ yes .. I know his specialty ]

You might have to bypass the Neuro community and get yourself evaluated for CCSVI .........

As I said on my post ... not all Neuro's are resisting the new idea .....

You know what I find funny ? When the Neurology field makes statements about how dangerous it is to enter veins and open stenosis' ...... and they would know this how ? ......... Almost every IR and such ..... stays clear of offering any opinions of the Neurology world ....... but the Neuro's seem to have no problem offering their two cents ..... in a field they have no business in or understand or can actually function in .

What nerve.

There is so much positive and good news regarding CCSVI ...... it just has to expand to Hawaii ......

Aloha



Mr. Success

Hi again,

I sure hope it does expand here before I kick the bucket, lol.

I did ask my neuro to refer me to Dr. Dake and he actually said he would then backed down from the whole thing when his fellow neuros dismissed CCSVI.

I tried emailing Dr. Dake, and I believe Stanford has stopped him from taking self-referred patients, though I think he'll be involved in a study (which I asked to be part of but never heard back) this year if it hasn't already started.

I'm sure there are other states in similar conditions, but at least they can drive or flying isn't as much of an ordeal as it is from here. I've known many people in Hawaii w/MS that left the state because of various reasons, medical care being one of them.

I hope conditions change - and that someone will bring this training here. But I think it's a long road ahead before treatment - and adequate treatment at that is available as this is all so new.

We all want it yesterday, but hopefully once credible doctors like Dr. Haacke, Dr. Sclafani, Dr. Siskin, and others bring the work of Dr. Zamboni & Dr. Salvi to the attention of the world, things will progress more quickly.

I hope. But I'll probably end up flying somewhere to the mainland & am psyching myself up for the experience.

Thanks for listening.

Oh, and on another matter, you mention doctors resistance to enter veins and opening them up, but as many of us are discovering, this is being done for some dialysis patients & patients with liver disease. Does anybody know which veins tend to collapse in these patients? Are these veins any more fragile than jugular or azygos veins? I'd think the jugular/azygos would be our most sturdy veins in the body (tho of course not like arteries). And are the stents used in dialysis patients the same as arterial stents or are they specialized??? if they're specialized, it seems they already have a headstart on the technology needed for venous stents.

selkie

Aloha Selkie,
We love to visit Hawaii but thanks for allowing me to walk in your shoes for awhile - so sorry you have this problem. We all hear the same story.... go local, but when you live in Alaska, Hawaii or Canada, it's pretty hard to "go local". Feels more like "going loco"!!

I just read a post recently from a fellow Canadian who was JUST tested by Dr. Hubbard in San Diego. He was very happy with the facility and he arranges for treatment as well. Dr. Hubbard , as I understand, is a neuro that is now devoting his practice to CCSVI. That may be another option for you. Best wishes & thank you for sharing your hardship.
Deb

What we have to do is keep the faith. I believe we are on the cusp of discovery and winning this war. And then help will abound. We do have some powerful doctors pushing for us, and more are joining when they find out what a great proceedure this is.

But until then, it's political. And a big part of it, I believe is the pharmaceutical companies. Their greed.

The vascular surgeon I saw yesterday told me when he first heard about the idea and concept of CCSVI, he was skeptical. And that was just around 5 months ago. But as he researched and saw the wonderful outcome, he became a believer, and is pushing for change.


He was at the conference in Boston on Monday, and met with a bunch of the big names, like Dr. Simkin. Also the Dr. said there were alot of people there that had had the treatment. He said it was awesome (not his words).

All I can say is keep the failth and be vigilant in your search, and you'll find a doctor near you. I did, and it's taken a really long time. Heck, I have an appointment in Poland in November. Needless to say, Im cancelling it!
Naychergirl

Excellent naychergirl, and spot on!!!!

L wrote:Perhaps they get so used to being unnecessary that they can't process the information! Alzheimer's -no cure. MS - no cure, spinal cord injury - no cure. The list goes on and on and on. It must be quite a depressing job and it surprises me that they are so unenthusiastic over the first thing that offers hope to anyone, ever, in the field of neurology.

My thoughts exactly L - the other scary thing their up to date refresher training has been via the pharmaceutical companies and god help the new neuro that may want to think outside their box they have the old etonion party to slap them back in and massage figures

Well it won’t be for long – CCSVI gathering speed making way for the neuro that wants to learn by like minded people in their field and not by the PHARMO rep and his statistics on lab rats.

Nice (uk govering body ) have made a start by telling PHARMO that while they can show good figures on paper its not working from the ground and their review did not equate to theirs therefore they have a stand off. the pharmo numbers and theirs = stale mate also I believe that the MS society dissociated them selves from the risk factor on some DMD drugs now that tells a tale or two

CCSVI and some ..is real medicine and that’s the KEY Lesson .

Im not knocking tablets they are saveing lives e.g statins and some the pharmo has to dig deep and step up to the task with MS think outside the box get new blood into the thinking.

Now I had me moan and my thoughts on the future based on NICE dissatsfaction on some DMD and the MS Society risk factor

I do know that it is not productive to whine ..but here goes. These are statements from the Copaxone, Avonex, and Betaseron medication literature:

Copaxone:
12 CLINICAL PHARMACOLOGY
12.1 Mechanism of Action

The mechanism(s) by which glatiramer acetate exerts its effects in patients with MS are not fully understood.

The way AVONEX® works in MS is not known.

The way Betaseron works in MS is not known.

From the Rebif medication literature;
Rebif, Avonex, and Betaseron are interferon beta therapies.
They are thought to fight MS by:
Regulating immune cells outside the CNS
Stopping immune cells from crossing the BBB ***
Reducing inflammation in the CNS

Lord help us. We were sentenced to a life of taking drugs that their makers state that they don't know how they work...and their thought do things. Don't get me talking about adverse effects of these drugs.

And angioplasty for CCSVI. let's see. Isn't it meant to stop blood from crossing into the brain and spinal cord.
Maybe I'm oversimplifying this but the absurdity is bizarre.


Ok, that was my note of exasperation. Back to finishing the letter to my newspaper and email/letter writing to IRs and VascSurgeons.
Thanks for indulging my little rant.

Here's another point of frustration:

Everytime a Neuro examines me, they check flexibility of ankles and pin swipe the bottom of my feet.

DID THEY NEVER NOTICE THAT THE FEET WERE PURPLE AND COLD? what the ....?

cmozena,
I agree 100%, but think I can top yours story!

My neuro had me checked for neuopathy. So, he ruled out neuropthy. So then, I asked him what it was, and why my foot was always cold and swells. And it turns purple, ususally in the afternoon and evening. On top of the pins and needles I have from my knee to my toes. He told me, and you'll love this, I kid you not, A PINCHED NERVE! What?

God willing, I'm going to be liberated in September. And I can't wait to tell my neuro see-ya!

Naychergirl