CCSVI - Aussie Action!

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

do MS drugs actually work?

Postby nico » Sun Jul 18, 2010 3:45 pm

helen,

l find yr experiences with MS drugs disturbing. l've had MS 15 yrs, yet have only taken MS drugs for 3.5 yrs. l took myself off them yrs ago because l was only ever having MS episodes whilst on them, which didn't make sense. mind u, my neuro was full of doom and gloom but that officious individual cannot dispute the facts, although l'm sure he would love to!

l'm off to have a second colonic today - the first did not work at all, so wish me luck...my eyeballs will turn brown soon otherwise... cheers, nico
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Postby Downunder » Sun Jul 18, 2010 6:36 pm

I too, have a reaction to any drug I take, except panadol which doesn't work anyway!!

Each time I take a drug I can't walk (so the incontinence drugs, if they did work left me helpless) and my headaches get really bad.

Hope you are better soon Nico.
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reactivity to drugs

Postby nico » Mon Jul 19, 2010 3:42 pm

Helen and Jennifer,

thankyou both for yr kind words and feedback - l really appreciate it.

cheers, nico
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Re: do MS drugs actually work?

Postby CureOrBust » Mon Jul 19, 2010 6:55 pm

nico wrote:l'm off to have a second colonic today - the first did not work at all, so wish me luck...my eyeballs will turn brown soon otherwise...
Have you tried high dose Magnesium Oxide? There is a product you can buy online in powder form. They talk of people taking up to 20 spoonfulls (cancer patients) with lemon juice. I tried it as part of the "Vonner" protocol, and it certainly has a "definitive clearing effect". Jimmylegs finds that a few magnesium supplements (most commonly magnesium oxide) are too many for her.
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Re: do MS drugs actually work?

Postby nico » Tue Jul 20, 2010 4:20 pm

CureOrBust wrote:
nico wrote:l'm off to have a second colonic today - the first did not work at all, so wish me luck...my eyeballs will turn brown soon otherwise...
Have you tried high dose Magnesium Oxide? There is a product you can buy online in powder form. They talk of people taking up to 20 spoonfulls (cancer patients) with lemon juice. I tried it as part of the "Vonner" protocol, and it certainly has a "definitive clearing effect". Jimmylegs finds that a few magnesium supplements (most commonly magnesium oxide) are too many for her.


howdy, can't take laxatives at all i'm afraid 'cos, cop this, they have the OPPOSITE effect. l have had some success today as l've been subsisting on boiled brown rice, steamed silver beet, etc - as per the instructions of a highly competent naturopath. cheers and thank you for yr interest! Nico
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didn't know how to just paste blasted link - SORRY!

Postby nico » Tue Jul 20, 2010 4:26 pm

NEUROLOGY 2010;74:1041-1047
© 2010 American Academy of Neurology
Vascular comorbidity is associated with more rapid disability progression in multiple sclerosis
R.A. Marrie, MD, PhD, R. Rudick, MD, R. Horwitz, MD, G. Cutter, PhD, T. Tyry, PhD, D. Campagnolo, MD and T. Vollmer, MD

From the Department of Medicine (R.A.M.), University of Manitoba, Winnipeg, Canada; Neurological Institute (R.R.), Cleveland Clinic, Cleveland, OH; Department of Medicine (R.H.), Stanford University, Stanford, CA; Department of Biostatistics (G.C.), University of Alabama at Birmingham; and Division of Neurology (T.T., D.C., T.V.), Barrow Neurological Institute, Phoenix, AZ.

Address correspondence and reprint requests to Dr. Ruth Ann Marrie, Health Sciences Center, GF-533, 820 Sherbrook Street, Winnipeg, MB R3A 1R9, Canada rmarrie@hsc.mb.ca.

Background: Vascular comorbidity adversely influences health outcomes in several chronic conditions. Vascular comorbidities are common in multiple sclerosis (MS), but their impact on disease severity is unknown. Vascular comorbidities may contribute to the poorly understood heterogeneity in MS disease severity. Treatment of vascular comorbidities may represent an avenue for treating MS.

Methods: A total of 8,983 patients with MS enrolled in the North American Research Committee on Multiple Sclerosis Registry participated in this cohort study. Time from symptom onset or diagnosis until ambulatory disability was compared for patients with or without vascular comorbidities to determine their impact on MS severity. Multivariable proportional hazards models were adjusted for sex, race, age at symptom onset, year of symptom onset, socioeconomic status, and region of residence.

Results: Participants reporting one or more vascular comorbidities at diagnosis had an increased risk of ambulatory disability, and risk increased with the number of vascular conditions reported (hazard ratio [HR]/condition for early gait disability 1.51; 95% confidence interval [CI] 1.41–1.61). Vascular comorbidity at any time during the disease course also increased the risk of ambulatory disability (adjusted HR for unilateral walking assistance 1.54; 95% CI 1.44–1.65). The median time between diagnosis and need for ambulatory assistance was 18.8 years in patients without and 12.8 years in patients with vascular comorbidities.

Conclusions: Vascular comorbidity, whether present at symptom onset, diagnosis, or later in the disease course, is associated with a substantially increased risk of disability progression in multiple sclerosis. The impact of treating vascular comorbidities on disease progression deserves investigation.

Abbreviations: EDSS = Expanded Disability Status Scale; HR = hazard ratio; MS = multiple sclerosis; NARCOMS = North American Research Committee on Multiple Sclerosis; PDDS = Patient Determined Disease Steps.

Study funding: Supported in part by the NIH, National Institute of Child Health and Human Development, and Multidisciplinary Clinical Research Career Development Program Grant K12 HD04909. The NARCOMS Registry is supported by the Consortium of Multiple Sclerosis Centers.

Disclosure: Author disclosures are provided at the end of the article.

Received September 17, 2009. Accepted in final form January 6, 2010.






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nothing to do with CCSVI?

Postby nico » Tue Jul 20, 2010 11:37 pm

hi all, the above condition may have zip to do with CCSVI. bheers
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it does fit actually

Postby nico » Wed Jul 21, 2010 12:50 am

hi all,

did some hunting - CCSVI is indeed a vascular condition which makes a co-existing disease likjew MS worse. it fits the definition...cheers, nico
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Re: do MS drugs actually work?

Postby CureOrBust » Thu Jul 22, 2010 2:45 am

nico wrote:howdy, can't take laxatives at all i'm afraid 'cos, cop this, they have the OPPOSITE effect.
Its not a "laxative", but I can understand your weariness; you know your body best.
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at last

Postby nico » Fri Jul 30, 2010 9:27 pm

hi all,

had a third procedure (private patient, not our guru, Prof T)last Tues and haven't taken any aspirin like l did after the second op. Both jugs had restenosed in response to the aspirin. l can state that with certainty 'cos my left jug (opened during my first op in March stayed open for 3 months with no probs until l took the aspirin. WEIRD!)Absolutely ecstatic to report my feet are warm, bowels work, no pain etc. gosh, if l walk again, it'll be the icing on my cake! We are so lucky.

cheers, ALL THE VERY BEST to everyone, Nico
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Re: at last

Postby Rokkit » Fri Jul 30, 2010 10:19 pm

nico wrote:Absolutely ecstatic to report my feet are warm, bowels work, no pain etc. gosh, if l walk again, it'll be the icing on my cake! We are so lucky.

Wow, that's excellent! Congrats! Best wishes for continued improvement.
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Re: at last

Postby nico » Fri Jul 30, 2010 11:35 pm

Wow, that's excellent! Congrats! Best wishes for continued improvement.[/quote]

thank you Rokkit!

cheers, the warm-footed one.
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Postby Val1964 » Fri Jul 30, 2010 11:53 pm

Hi Nico,
I am so happy for you. :D My last procedure didn't go so well. i am feeling pretty fed up.
But I am still researching and hoping.
check your pm
Be Sweet
Val
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an answer!

Postby nico » Sat Jul 31, 2010 12:19 am

Val,

l've answered! cheers, nico
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hooray Nico!

Postby hwebb » Sun Aug 01, 2010 4:46 am

Nico,

that's great news! It's interesting about the asprin. They say asprin is very hard on the stomach lining. Wonder if the same is true for the vein lining (the endothelium)? Maybe another anticoagulant would be gentler (say an omega-3 agent like fish oil). Just thinking aloud here. Sounds like you had better results using no coagulant at all. Wish they could do a test before the angioplasty to see which after-care is likely to be best for each patient.

Helen
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