after 8 years, they are saying it isn't MS?

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after 8 years, they are saying it isn't MS?

Postby whyRwehere » Mon Jan 18, 2010 5:56 am

I just had a very interesting phone call from the doctor who treated my husband for a severely blocked jugular, and who also discovered that my husband is missing his sacral plexus veins. She spoke to 4 neurologists (major ones in the city) about my husband's case, and they smiled and said, "we don't believe he has MS".
8 years ago, 3 neurologists decided my husband did have MS. (What the hell is MS, anyhow?) So, I guess he has "CCSVI", I am glad a doctor out there has been giving a name to the illness, otherwise, doctors might think my husband had "MS" and be giving him poison for it...be warned out there.
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Postby jimmylegs » Mon Jan 18, 2010 6:26 am

AFAIC, MS dx is the round file for when docs have a set of signs and symptoms they can't figure out because they have ruled out every possible cause they can think of.

now that docs can come up with another explanation for your husband's issues, the dx criteria for "MS" are not met.

in saying that, i've drawn on an older set of dx criteria - shumacher 1965, which was updated by poser 1983 and then macdonald 2001, i think.

The Schumacher criteria are:
-Neurological examination reveals objective abnormalities of central nervous system (CNS) function.
-History indicates involvement of two or more parts of CNS.
-CNS disease predominately reflects white matter involvement.
-Involvement of CNS follows one of two patterns:
-Two or more episodes, each lasting at least 24 hours and at least one month apart.
-Slow or stepwise progression of signs and symptoms over at least 6 months.
-Patient aged 10 to 50 years old at onset.
-Signs and symptoms cannot be better explained by other disease process (you don't see this one in poser or macdonald)

research abstract link:
Differential diagnosis in multiple sclerosis
Multiple sclerosis can usually be diagnosed from a patient's history, clinical examination, cerebrospinal fluid (CSF) analysis, and observations from magnetic resonance imaging (MRI). However, sometimes, the classic clinical criteria, even when supported by MRI findings or by abnormalities of the CSF, may not be sufficiently specific. Many conditions can produce a multifocal central nervous system syndrome with a relapsing-remitting course in young adults. The rate of misdiagnosis is around 5%, indicating that 1 in 20 patients thought to have MS have instead a condition resembling MS. The need to reach diagnostic certainty is particularly important given the availability of treatments which may potentially prevent the progression of the disease. Therefore, the search for new methodological approaches which increase the sensitivity and specificity of the diagnosis is warranted. While waiting for the development of new techniques to facilitate an early and correct diagnosis, a correct approach to a suspect MS patient has to be underlined in order to reduce the risk of a misdiagnosis. In this paper, I illustrate the diagnostic work-up that the practicing physician should follow when first confronted by a patient suspected of having MS


Vitamin B12, demyelination, remyelination and repair in multiple sclerosis
Multiple Sclerosis (MS) and vitamin B12 deficiency share common inflammatory and neurodegenerative pathophysiological characteristics. Due to similarities in the clinical presentations and MRI findings, the differential diagnosis between vitamin B12 deficiency and MS may be difficult. Additionally, low or decreased levels of vitamin B12 have been demonstrated in MS patients. Moreover, recent studies suggest that vitamin B12, in addition to its known role as a co-factor in myelin formation, has important immunomodulatory and neurotrophic effects. These observations raise the questions of possible causal relationship between the two disorders, and suggest further studies of the need to close monitoring of vitamin B12 levels as well as the potential requirement for supplementation of vitamin B12 alone or in combination with the immunotherapies for MS patients.


not suggesting b12 has anything to do with your hubby's case, it's just a well known example of how docs can misdx if they are not careful.
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Postby whyRwehere » Mon Jan 18, 2010 6:40 am

Jimmylegs, I thank you for your response, although I have nothing to say for or against it. It seems to me that 100% of MS diagnosis are wrong, because everyone out there probably has a different cause and cure that will work for them. I don't think these doctors have an explanation as to what my husband might have, so he is really still in that file you speak of....
Well, I am glad we found venous abnormalities, at least that is something to try to fix. I look forward to meeting these men in the future, so that I can have a healthy discussion about it (in my dreams! I will see them, but I doubt they are interested in my thoughts).
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Postby shye » Mon Jan 18, 2010 2:49 pm

WhyRwehere,
Crazy, I know. My neuro-opthalmologist said it was MS (from MRI ,and optic neuritis, and history--despite fact the current eye tests were pretty good, and not having an incident then)--
The MRI then ordered by this dr (which showed MANY more brain lesions than the previous MRI he was using) was interpreted by radiologist as: impression includes microvascular disease (EUREKA-- CCSVI in the accepted lingo) vs inflammatory/demelinating process(ie, MS).

So Eye Dr felt it would be in my interests to be attached to a major teaching hospital MS clinic with trials, meds, "expertise" etc,. So when examined by them (note, i did forget to bring the med. records documenting optic neuritis, retrobulbar neuritis, and optic atrophy--so they had to take my word, and you know how that goes)--I was in a plus state that day--ie, no obvious slurring or muscle fatigue, eyes pretty good, walking pretty good, so appeared okay. Their interview questions much less comprhensive and not as detailed as those of the neuro opthalmologist.
Upshot: POSSIBLE MS , "lesions more consistent with vaso than MS, but could be consistent with MS"
SO VERY CLEAR IT IS ALL UNCLEAR RE: MS !!!!

AND get this--they never told me about the vaso part!!!(I just found out a year later when requested copy of records because I knew I would never go back there--they were super negative about vitamins, etc, and tried to convince me to stop the B12 shots). just said come back when you get a bit worse, we have many medicines that can help you.

And I will second your call for caution re: meds. If they can't determine a disease better than they do MS, why take "MS medicine"?? Better to get your immune system in shape with diet and supplements, find out what you might be allergic to and eliminate it from your life, ie, get yourself in as good health as you can, and possibly along the way you will start to see what really might be wrong with your body. Food allergies trigger attacks in me, and probably in long run contribute to demyelination--so best to stop the offending foods, and use nutrients to repair the myelin
rather than take meds with ALL sort of bad side effects on your body.
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Postby whyRwehere » Thu Jan 21, 2010 12:26 am

Shye-
Thanks for your post...good to know we are not alone (although I can think of several cases on TiMS that are like my husband). Well, I have been really busy these last 2 weeks, so I am sorry to be late to reply to you. The good news is, that all my husband's old pictures have been located, so now we have something to discuss, when I meet the neurologist.
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