Can people reject their MS diagnosis?

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

Can people reject their MS diagnosis?

Postby frodo » Thu Mar 24, 2011 5:21 pm

I was reading the McDonald criteria and I was surprised by this paragraph, into the requirements for diagnosis (See http://www.msdiagnosed.org/McDonald.pdf , page 125, second column, second paragraph):

No Better Explanation

The Panel emphasizes that, even if the clinical evidence
and paraclinical studies are strongly indicative of MS,
there must be no better explanation for the clinical and
paraclinical abnormalities than MS for a secure diagno-
sis to be made.

At this moment there is at least the Putnam experiment with dogs and the new mouse model of CCSVI that produce demyelination. There is also the mind impaiment in CCSVI (http://ccsvism.xoom.it/ISNVD/Abstract-Hubbard.pdf) and the fatigue effect (http://www.ncbi.nlm.nih.gov/pubmed/20351673)

Therefore it can be said that CCSVI explains the clinical and paraclinical abnormalities found, and therefore, according with the "gold standard", any person shown to have CCSVI should get the MS label removed.

Anybody disagrees with this?
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Re: Can people reject their MS diagnosis?

Postby drsclafani » Thu Mar 24, 2011 6:45 pm

frodo wrote:I was reading the McDonald criteria and I was surprised by this paragraph, into the requirements for diagnosis (See http://www.msdiagnosed.org/McDonald.pdf , page 125, second column, second paragraph):

No Better Explanation

The Panel emphasizes that, even if the clinical evidence
and paraclinical studies are strongly indicative of MS,
there must be no better explanation for the clinical and
paraclinical abnormalities than MS for a secure diagno-
sis to be made.

At this moment there is at least the Putnam experiment with dogs and the new mouse model of CCSVI that produce demyelination. There is also the mind impaiment in CCSVI (http://ccsvism.xoom.it/ISNVD/Abstract-Hubbard.pdf) and the fatigue effect (http://www.ncbi.nlm.nih.gov/pubmed/20351673)

Therefore it can be said that CCSVI explains the clinical and paraclinical abnormalities found, and therefore, according with the "gold standard", any person shown to have CCSVI should get the MS label removed.

Anybody disagrees with this?


i love the logic, but we have to proove the association between the plaques and the ccsvi

we probably can do it but it will take some time

the case i just reviewed on DSASQ was really interesting. seems like a case of ehlers danlos masquerading as ms....hopefully we will get an answer some day

s
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ms label

Postby zinamaria » Thu Mar 24, 2011 7:29 pm

Okay, it's not scientific reasoning, but heck, I'll reject the MS diagnosis any day. I already tell myself I do not have MS because we don't really know what it is, I just tell myself that I have such and such issues right now. And then me and my body try to work it out of my body.

So, I have to say I love the title of this thread.

On the other hand, I would like to be clear that I do not underestimate the horrific problems associated with this non-MS, MS and I do know for sure that I have CCSVI that is associated with the symptoms I do have, or at least that is where the science is pointing.
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Postby jimmylegs » Thu Mar 24, 2011 8:13 pm

my neuro said b12 deficiency did not explain all the problems i had at dx. like the o-bands.

docs also said i was not b12 deficient. however, in my view other likely nutritional issues associated with veganism explained the problems that weren't consistent with b12 deficiency.

and, faulty computer records and my own patterns of supplementation and testing screwed up any past indication of b12 deficiency.

so, i ended up with checkmarks in every box for the mcdonald criteria.

i always questioned whether a set of criteria derived from the mainstream population could be properly applied to a rather abnormal 15 yr vegan! - no longer of course :)
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ccsvi

Postby blossom » Thu Mar 24, 2011 8:34 pm

i have from day one rejected the idea that we all have these multiple symptoms that along the way mainstream decided to throw into one basket and call ms.

my story is trauma-ccsvi can be brought on by trauma as i had read early on. that's what caught my attention. so can spinal stenosis or chari or bone spur in the cervical area or misailgned atlas etc. cause many of the symptoms we have.

but, through the yrs. and at ths very time--once you are branded "ms" it is a real fight to try to get tested and treated for any of the above and any other thing such as hugh's syndrom or hemochromatosis etc.

my pcp is not at all for ccsvi - he's tolerating me-also i have a really screwed up spine and neck problems and he is not being very cooperative about ordering the tests i need. i even went as far as telling him--ok, ok i have ms----but if you can honestly tell me that since i have this called ms---can you guarantee me that i will never get cancer or have a heart attack or even get hemorrides or any other health problem----if you can't guarantee me that---then how can you look me in the eye and tell me ccsvi or spinal stenosis and the other things i mention could not be playing a part in my symptoms. but, he still would not write me the script i need. i'll guarantee you that if the only way there was to get tested for ccsvi was by a doctor or neuro. writitng a script we'd all be out of luck--not many would do it.

what happened to what the patient wants? yep, we are labeled and i don't like it-never did. it's not like say we have these symptoms that fit right into one slot.

what is the problem--are they afraid that missing pieces of the puzzle are being found out and the puzzle just might get solved. we need these doctors to all work together to benefit us the patient. and, get the darn label off us.
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Re: Can people reject their MS diagnosis?

Postby cheerleader » Thu Mar 24, 2011 10:02 pm

drsclafani wrote:the case i just reviewed on DSASQ was really interesting. seems like a case of ehlers danlos masquerading as ms....hopefully we will get an answer some day
s


Dr. S--this caught my eye. Ehler Danlos is a connective tissue disorder, and affects collagen. Just like Dr. Gabbiani's studies you heard in Bologna, re: shift in jugular veins pf pwCCSVI from collagen type I to collagen type III....SAME exact thing happens in Ehler Danlos. Maybe ED can be a cause of CCSVI, and look like MS....
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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I'm not a label

Postby hwebb » Fri Mar 25, 2011 3:38 am

I would love to get the MS label removed. Would then be free to get medical treatments (as many medical treatments are currently denied to PwMS). Would also able to get some insurance coverage (health/salary continuance).
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MS is multifactorial

Postby MarkW » Sat Mar 26, 2011 8:27 am

Frodo wrote:
"...........it can be said that CCSVI explains the clinical and paraclinical abnormalities found, and therefore, according with the "gold standard", any person shown to have CCSVI should get the MS label removed.

Anybody disagrees with this?"

I disagree Frodo. You seem to failing into the same hole that the neuros fell into with the immune theory. Neuros say MS is immuno and nothing else. You seem to say MS is vascular and nothing else. Both ideas are wrong.

MS is complex and multifactorial, without a single cause. I hope the vascular researchers do not go down a single cause route for MS. I think Prof Zamboni MD understands the complexity of MS. I was delighted when he called CCSVI a syndrome.

Lets diagnose and treat CCSVI syndrome, while MS and CCSVI research continues.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: MS is multifactorial

Postby frodo » Sat Mar 26, 2011 12:47 pm

MarkW wrote:
I disagree Frodo. You seem to failing into the same hole that the neuros fell into with the immune theory. Neuros say MS is immuno and nothing else. You seem to say MS is vascular and nothing else. Both ideas are wrong.


I agree with you. The disease we suffer around here is probably both autoimmune and vascular. The question is if this disease can be called MS.

And according to the current "clinical definition" of MS, maybe not. You can call it as you want but as soon as you find an explanation for it, you cannot call it MS anymore.

Of course I didn't write those McDonald criteria and I cannot give you an explanation why they defined MS it in this way. But as far as I know those criteria are universally accepted.
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MS is multiple lesions

Postby MarkW » Mon Mar 28, 2011 11:00 am

MS simply means multiple lesions, Frodo. That is the definition of our disease. Historically a diagnosis could only be certain on death, when the brain could be sectioned and stained. Nowadays MRI shows lesions before we die. Not a lot of progress in 150 years !
I suggest that the clinical criteria are only useful for neuros. I agree with you, to change the name MS needs a better one to come along - Multiple Causes or Multiple Factors or ?. We just have to live with Multiple Sclerosis............deep joy.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: MS is multiple lesions

Postby frodo » Tue Mar 29, 2011 12:11 am

MarkW wrote:MS simply means multiple lesions, Frodo. That is the definition of our disease. Historically a diagnosis could only be certain on death, when the brain could be sectioned and stained. Nowadays MRI shows lesions before we die. Not a lot of progress in 150 years !
I suggest that the clinical criteria are only useful for neuros. I agree with you, to change the name MS needs a better one to come along - Multiple Causes or Multiple Factors or ?. We just have to live with Multiple Sclerosis............deep joy.

MarkW


Not really. That was the original definition, but it has changed. Now, according to McDonald et. al, MS is a clinical condition, and the "clinical definition" is the McDonald criteria.
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Ownership of Multiple Sclerosis

Postby MarkW » Tue Mar 29, 2011 2:58 am

A group of neurologists lead by McDonald changed the clinical condition, and call the "clinical definition" the McDonald criteria.....
SO WHAT. Their work was all about neuros owning MS and is why they got so angry with Prof Zamboni.
Multiple Sclerosis means multiple lesions, plain and simple. Neuros will be annoyed at pwMS for sticking with the original and true definition. For me thats a good reason for reminding everyone "Multiple Sclerosis means multiple lesions". I have multiple lesions !

Its going to be a long argument with the neuros, who are closing their minds..........

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Ownership of Multiple Sclerosis

Postby frodo » Tue Mar 29, 2011 7:14 am

MarkW wrote:A group of neurologists lead by McDonald changed the clinical condition, and call the "clinical definition" the McDonald criteria.....
SO WHAT.


I agree with you. The problem is that Mc Donald criteria do really have an international support, and even have the status of an international consensus. It would be too difficult to try to change that now
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Postby belsadie » Tue Mar 29, 2011 10:48 am

I really could not believe there was even one other person that rejected the MS concept. It just made no sense to me that all these explanations for symptoms we've been fed as though it were Gospel, could not be proven.
Even the neuros have to admit that when they shrugged their shoulders at our questions, that shrug was genuine. I never could come to terms with being assigned a disease named after its symptoms. There were too many ?'s. That's not to say this new hypothesis has not probably raised more but, at least, we now have some empirically measurable evidence of specific abnormalities from which we can, using some sensible deductible reasoning,
explain. When you talk to PWMS some have had Epstein Barr infections,some have had trauma,some-have other identified genetic abnormalities, etc.,etc., etc.,etc
BRAVO to those attempting to put most of these pieces together and identify common ground. We are forever thankful.......
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Postby Johnson » Wed Mar 30, 2011 12:46 am

I'm late to the conversation, but for what it's worth, I have always rejected the "MS" diagnosis, and the auto-immune notion. It is not an over-active immune system, but a suppressed one, is my belief.

Further, I am near-certain that anaerobic, connective tissue-loving bacteria (b. Burgerdorrfi - AKA Lyme spirochete) alter the endothelium and block vitamin D receptors (making supplemental vit. D useless, and even harmful) - this to create an anaerobic environment in the brain (preferred terrain), and suppress the immune system. Bacteria also have the capability to alter DNA, which could explain some of the DNA mutations in Pw"MS".

That is just my own Big Idea (informed by the research of others)...
My name is not really Johnson. MSed up since 1993
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