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Hi all,

I was dx'd with MS in 1999. I just had an MRI with no active lesions. Yet my ability to walk continues to diminish [weak knees, lots of pain in calves, thighs].

So I have to ask 'if no new lesions, why is it harder to walk]???

I have looked at Mays Thurner and Vertebrobasilar Insufficiency. The second condition seems to have alot of my symptoms [i.e. balance, walking, sleepiness, nausea, double or low vision.

Can anyone shed light?

Lesion load and disability very often do not go hand-in-hand.

Once the disease becomes progressive, lesion loads tend to stabilize, but disability progression continues.

There's more going on to the disease process than just the formation of lesions. There is gray matter atrophy and axonal and neuronal damage and death being done at a level not detectable by MRI.

What you are describing is unfortunately actually pretty typical for patients with MS…

My symptoms got WAY worse from my diagnosis in May 08 until now. I had an MRI done in March 2010 by the same clinic in my home town of Grande Prairie Alberta, Canada that did my first MRI in spring of 08 that led to my diagnosis. The 2 MRIs revealed no apparent change in the one large lesion in my c-spine. I just got back from the Jacobs Neurological Centre at BNAC in Buffalo. It was there that Dr. Hojnacki (v smart neuro IMO ) showed me I had a dozen or so spinal lesions and several discreet lesions within the one large one. He was critical of my previous MRI testing as he was able to find several lesions that the other MRI showed as one large one. His MRI took about twice the time that my previous ones took.

Wow marcstk!

Lesion load and disablity have never been explained to me before.

Unfortunately 'disability progression' is not part of my fantasy.

Thanks for the lesson.

TYA

Lesion load and disability is a well known disconnect I am surprised your neuro did not explain this (time for a new neuro perhaps). I have had ms for 20 years and have no new lesions and plenty of accumulated disability. Because of the disconnect I never bothered with new MRIs except recently to get insuance to pay I had to have one with my MRV no new lesions.

BZW the drugdcompanies must love this disconnect because they base their studies for the most part on lesion load, it helps them keep people on drugs that may provide no benefits whatsoever.

jamit,

I don't know about lesion load, probably because I have spent very little time in front of a neuro since my dx in 1999. Mostly because I refused drug therapy from the get go.

I would like to know if any one has seen a reduction in lesions? Or is it even possible?

Thanks! TYA

I figure one thing that will come out in the wash after Liberation is universal, is that they stop if you stop the reflux and free up the veins.

Hey 10years,
Did u do an MRI of the spine as well as brain ?

And don't forget that according to Dr. Zamboni's CCSVI theory, each day you are accumulating free iron deposition, which is the real culprit causing the cascade of neurological symptoms.

The number, size, and placement of lesions is the result of venous disorders.

Donnchadh

Donnchadh wrote:The number, size, and placement of lesions is the result of venous disorders.

Yes...one big thing missing from autoimmune theory is an explanation of why lesions form where they do. There are people who never have spinal lesions, only the brain...others have no brain lesions, only spine...no real explanation for that in the autoimmune theory. Also they can clinically classify RR, PP, and SP, but offer no explanation for why.

CCSVI has a plausible and testable answer for these 'unanswerables'.

vivianne - no MRI of spine, just head and neck - yet they say 'no spinal stenosis' - go figure!

TYA

I think I've read that 90% of lesions are 'silent', that is without symptoms. I've also read that in autopsies, up to 5% of people have lesions, much higher than MS rates.

Hi,
Your second paragraph may be true, but their research was also concerning relapse rate.
My progression has been very slow, but each relapse has hit me hard, like a sandbag to the back of the head - sudden too.
One minute I'm fine, the next I can't move.
So in my case, I feel that the reduction in relapse rate has been the most important benefit.

In ten years, I've had 4 relapses whilst taking Rebif, one whilst I wasn't on Rebif as I'd moved countries.
I had my first MRI since 01 and I had 5 lesions more than the last MRI.

Day to day - life is pretty normal. Yes, I have the usual delightful MS symptoms that most people with RRMS get, neuropathic pain, spasms, sudden fatigue, but these are just part of life. I'm middle aged, nothing works as well as it did 20 years ago.

I had no more MRIs because I was living in the UK. Unless you are in a trial, doctors consider yearly MRIs to be a waste of their budgets.

After last year's sudden and very nasty relapse my new Spanish neuro, applied for funding for me to restart Rebif. This was granted and hopefully, without excess stress or injury, it will be several years before I have another and even more hopefully, testing and Liberation will be commonplace by then.
Until then, I sticking to my Rebif/LDN/diet/Vitamin D3 regime and I'm going to keep dropping hints to my neuro about CCSVI.

jamit wrote:Lesion load and disability is a well known disconnect I am surprised your neuro did not explain this (time for a new neuro perhaps). I have had ms for 20 years and have no new lesions and plenty of accumulated disability. Because of the disconnect I never bothered with new MRIs except recently to get insuance to pay I had to have one with my MRV no new lesions.

BZW the drugdcompanies must love this disconnect because they base their studies for the most part on lesion load, it helps them keep people on drugs that may provide no benefits whatsoever.

Cece wrote:

Donnchadh wrote:The number, size, and placement of lesions is the result of venous disorders.

Yes...one big thing missing from autoimmune theory is an explanation of why lesions form where they do. There are people who never have spinal lesions, only the brain...others have no brain lesions, only spine...no real explanation for that in the autoimmune theory. Also they can clinically classify RR, PP, and SP, but offer no explanation for why.

CCSVI has a plausible and testable answer for these 'unanswerables'.

I feel that autoimmune hypothesis is missing an explanation for even the existence of the lesion when compared to the CCSVI hypothesis. Sure, you could try to explain a lot of stuff. Well, the immune cells cause them because they go around in the blood, and veins vs arteries -- well don't they swim upstream, so the direction of the most bad guys... aack. But why try, when explanations given CCSVI hypothesis just jump out at you? It's a higher-quality hypothesis.

jgkarob wrote:Hi,
Your second paragraph may be true, but their research was also concerning relapse rate.
My progression has been very slow, but each relapse has hit me hard, like a sandbag to the back of the head - sudden too.
One minute I'm fine, the next I can't move.
So in my case, I feel that the reduction in relapse rate has been the most important benefit.

In ten years, I've had 4 relapses whilst taking Rebif, one whilst I wasn't on Rebif as I'd moved countries.
I had my first MRI since 01 and I had 5 lesions more than the last MRI.

Day to day - life is pretty normal. Yes, I have the usual delightful MS symptoms that most people with RRMS get, neuropathic pain, spasms, sudden fatigue, but these are just part of life. I'm middle aged, nothing works as well as it did 20 years ago.

I had no more MRIs because I was living in the UK. Unless you are in a trial, doctors consider yearly MRIs to be a waste of their budgets.

After last year's sudden and very nasty relapse my new Spanish neuro, applied for funding for me to restart Rebif. This was granted and hopefully, without excess stress or injury, it will be several years before I have another and even more hopefully, testing and Liberation will be commonplace by then.
Until then, I sticking to my Rebif/LDN/diet/Vitamin D3 regime and I'm going to keep dropping hints to my neuro about CCSVI.

I hope you never convert to SP'MS'. If Rebif prevents that, whether it has to do with it's effects on immune cells, veins, whatever, great! If it works don't fix it. But if it stops working you may get a little more vocal about that Liberation. Remember, like all treatments for so-called MS, the earlier you do it, the better off you are. Maybe all treatments, period?

I was about to try to reach Dr. Zivadinov about my friend's son's GBS, which is responding very well to blood transfusions. Incidentally, they are using his jugular. Guess it's good he was a star athlete, and that treatment started early. He seems to be mending quickly.

Of course, once you've been hit upside the head once too many times... maybe that's why Zamboni says don't go off your meds. Something might be working for some unknown reason.