My strange journey with MS and CCSVI !!!

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

Postby Vhoenecke » Thu Jun 03, 2010 8:09 am

I went to Poland, had lesions in my MRI in Canada. They know what they are doing in Poland, you would be treated there and get better plain and simple.
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Postby Sport » Thu Jun 03, 2010 8:20 am

Lyon wrote:
patientx wrote:The location of the spots seen on MRI, i.e lesions, is used to help rule out the differential diagnoses for MS, things like vasculitis.
:lol: Yet again I'm going to hype my buddy's paper on the "Differential Diagnosis of MS" because within the contents of table 7 http://www.neurology.wisc.edu/publicati ... euro_2.pdf can be found some ailments showing lesions which are sometimes misdiagnosed as MS....with in mind that lots of lesion producing ailments not commonly misdiagnosed as MS are purposely not included.


Thanks, Bob. This is one of the most useful pieces of information that I have seen on this site in some time. :)
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Postby Lyon » Thu Jun 03, 2010 9:45 am

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Last edited by Lyon on Sun Nov 20, 2011 8:32 pm, edited 1 time in total.
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Postby Trish317 » Thu Jun 03, 2010 11:19 am

Lyon wrote:
Sport wrote: Thanks, Bob. This is one of the most useful pieces of information that I have seen on this site in some time. :)
:) I'm glad it helped and I know John would be happy that it was of use!


I also found it very interesting. It also made me wonder just how many people may actually be diagnosed incorrectly.
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Postby cheerleader » Thu Jun 03, 2010 1:00 pm

that is a terrific paper, Bob! Really great research, and it's all in one place--and one hundred differential diagnoses. wow. MS really is a diagnosis of exclusion. And there's so much to exclude. Makes you wonder if venous congestion/jugular stenosis will end up on that list, huh?
I hope you get some answers, Jill...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Thu Jun 03, 2010 3:55 pm

I have to chime in here and say that this paper on the differential diagnosis of MS is very interesting. Maybe I should take it to my meeting with my new neurologist !!! She is also a professor of medicine but is not an MS neuro and may be less biased toward MS. I am glad to have gone to BNAC and contacted my neuroradiologist not only for the CCSVI testing but for 2 second opinions on my atypical MS. I hope I get some real answers but I am inclined to be skeptical at this point. Every time I visit my current MS neuro I ALWAYS ask him : "are you SURE I have MS ?". He always says yes. What I need is not a diagnosis but relief from my symptoms. Since I do have 2 signs of CCSVI maybe CCSVI is separate from MS in some cases. Otherwise why did BNAC find 20% of controls with CCSVI ?

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Postby CRHInv » Thu Jun 03, 2010 4:12 pm

OC - You are still hoping to get the stenosis corrected, right?
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Cece » Thu Jun 03, 2010 4:12 pm

BNAC could do a follow-up study on those controls -- just a mailed questionnaire -- to see what levels of fatigue they report.

If fatigue is one of the big symptoms of CCSVI, then if those are accurately found results that those controls have CCSVI (something I am not convinced of, but okay), then it would be interesting to see if those controls report more fatigue than the nonccsvi controls.
"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 ozarkcanoer » Thu Jun 03, 2010 7:45 pm

CRHinv,

I would love to get treated but I want to be treated at home. We have some wonderful doctors here in St Louis at the Washington University School of Medicine. I think I mentioned the possible CCSVI clinical study/trial that I might participate in. I am in the dark about what it will involve but I know there is a chance I will get to be a participant.

Cece,

That's a good idea for BNAC to follow up on the 20% with stenosis who don't have MS. Poor BNAC is so loaded with work right now !!

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Postby patientx » Fri Jun 04, 2010 4:42 am

cheerleader wrote:that is a terrific paper, Bob! Really great research, and it's all in one place--and one hundred differential diagnoses. wow. MS really is a diagnosis of exclusion. And there's so much to exclude. Makes you wonder if venous congestion/jugular stenosis will end up on that list, huh?
cheer


#27 in the list:

Stroke in young - Aterial (or rarely venous) occlusion with ischemic strokes, often recurrent, in young patients....

Signs and symptoms are usually typical of ischemic stroke rather than demyelination, and MRI often shows gray matter involvement....
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Postby whyRwehere » Fri Jun 04, 2010 5:16 am

I haven't mentioned this earlier, because I can not name names, but as you know my husband was treated and the doctor wanted to write a paper about his case. She discussed this with the neuro dept and they said that they doubted my husband's diagnosis- they did not believe he had MS and wanted my husband to be seen by one of their own...which after a lot of stress and time my husband was seen, only to be told "Oh, yes, you do have MS."
So, the original doctor sent in the paper to a neuro journal, whereupon it was rejected due to the fact that they did not believe his MS diagnosis was accurate. Cartwheels and roundabouts.
I am having my husband try the chiropractor...it certainly helped my frozen shoulder.
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