CCSVI, Fatigue and Disease Progression: Connected ?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI, Fatigue and Disease Progression: Connected ?

Postby Shayk » Mon May 17, 2010 4:36 pm

Hi all

I'm still in the mode of creating dots that may or may not ultimately connect. This time it seems to me there could be dots (yet to be connected of course) between CCSVI, fatigue, and disease progression.

First off, per the research in Italy, the "symptom" of CCSVI may be chronic fatigue (CF) and intervention seemed to reduce the perception of CF.

Is chronic fatigue the symptom of venous insufficiency associated with multiple sclerosis? A longitudinal pilot study

CONCLUSION: The reestablishment of cerebral venous return dramatically reduced CF perception in a group of MS patients with associated CCSVI, suggesting that CF is likely the symptom of CCSVI.

Now, for the "loose" dots, fatigue is being recognized more and more as a significant symptom and there is some information potentially linking fatigue with EDSS scores, disease progression and cortical atrophy.

Multiple sclerosis beyond EDSS: depression and fatigue
Fatigue is present in over three-quarters of patients with multiple sclerosis. It is considered the most debilitating symptom of the disease and is a major reason for work absenteeism

Now, for the interesting dots--fatigue has also been linked to EDSS scores, disability progression and atrophy.

Neuropsychiatric manifestations in multiple sclerosis: correlation of fatigue and depression with disease progression
When the patients were compared according to the presence of fatigue symptoms, patients with fatigue had significantly higher EDSS scores (p=0.03).


Physical dimension of fatigue correlated with disability change over time in patients with multiple sclerosis
After three years, with control for gender, age, and baseline disability status, a high baseline level of physical fatigue was associated with a worsening of disability status, whereas a low baseline level of physical fatigue was associated with the absence of worsening of the EDSS score.

Other dimensions of fatigue, depression and SF-36 were not associated with a worsening of disability. A patient's perceived fatigue may be not only a clinically and psychosocially meaningful outcome but also a predictor of objective outcomes such as changes in disability status at three years

Thus, based on that research, there seems to be a possibility that if interventions for CCSVI relieve fatigue, there is definitely the potential for stabilizing EDSS scores. 8)

More research--a French adaptation of the tool used to measure fatigue.
Reconsidering fatigue at the onset of multiple sclerosis
We found a significant correlation between higher EMIF-SEP total scores and higher EDSS scores; likewise physical dimension of the EMIF-SEP were linked to disability

Other studies have failed to show any correlation between fatigue and disability. We suggest that this may be due to differences in sample size, or to the type of instrument used to quantify fatigue. As seen above, some tools do not allow for multi-dimensional assessment of fatigue. The EMIF-SEP scale is useful in that it allows for qualitative and quantitative assessment of fatigue.

Last, a link between atrophy and fatigue.

Relationship of cortical atrophy to fatigue in patients with multiple sclerosis
CONCLUSIONS: Cortical atrophy of the parietal lobe had the strongest relationship with fatigue.

We know atrophy is related to disability levels.

In all--diagnose and treat CCSVI, decrease fatigue and stabilize EDSS? It would be so sweet. :D

Take care all...just wanted to throw this out there while we wait for the clinical trials.

Sharon
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Postby Cece » Mon May 17, 2010 6:14 pm

As someone with high fatigue (but so far low edss), I am 8O 8O.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby jackiejay » Mon May 17, 2010 6:28 pm

I am sure this has probably been answered in previous threads but not sure where to find....what are the other common symptoms of CCSVI?
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Postby Cece » Mon May 17, 2010 6:36 pm

hmm...fatigue, MS lesions, optic neuritis, cold hands/feet, neck ache, poor balance...if you look at the tracking thread, basically anything anyone reports as improvements after treatment might be considered CCSVI-related symptoms
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Postby kc » Tue May 18, 2010 4:48 am

I was diagnosed in 1996. The fatigue was unbearable but didnt have that much physical disability. That is when I used to get "But you look so good".
Then as the fatigue went on the physical stuff came. I am prob a 6.5 on the EDSS. Although since sleeping inclined, my fatigue has improved and so has my physical limitations. A lot, but now I am waiting for the roto rooter procedure to really improve.

Sharon, I definitely agree with you line of thought.

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Postby Liber8 » Tue May 18, 2010 7:13 am

I was DX in '93 and had a few strong symptoms at first. Then years of a mild/moderate relapse now and then. Big issues in 2005 and heat/fatiuge since along with cement leg and pains.

I am not sure if a person is shown to have CCSVI what symptoms you would expect to see. I am sure there are healthy controls that were found with CCSVI. So I am not sure if it takes time to affect people or if it's the dartboard theory. My Neuro once told me it was like throwing darts. You could never tell what part of the brain would be attacked and thats why everyone is different.

I have to admit my ignorance here. What is the EDSS. I know it shows severity of disability but what is good/bad score and how is it determined. I actually have never knowingly have had it done.
RR DX 1993
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Postby Shayk » Tue May 18, 2010 6:19 pm

Cece--sure didn't mean to shock--seems to me that in addition to the CCSVI research on fatigue and the positive impact of balloon angioplasty on it, there are lots of people reporting less fatigue after their procedures. :)

kc--very interesting history there.

Liber8--Here's a link that outlines the Expanded Disability Status Scale (EDSS) I've never had one formally either. 0 is "normal" and it goes up to 10 "death".

Personally I think it takes time for CCSVI to have an impact and there are probably some other variables in play. Time will tell.

All the best

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