Benign MS. Is it really benign?

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

Benign MS. Is it really benign?

Postby Taurus » Mon Sep 24, 2012 7:08 pm

Yesterday, I had my 4th MRI of Brain and Cervical in four years. Last 3 findings suggested that I have MS plagues but in quiescent phase. I now feel that I am going down though slowly. Is my MS really in benign or what. One of my neuro even said that I may not even have an MS as there had not been a single relapse after four years. This could be ADEM. This is all so confusing. Can someone share with his/ her experience. Kindly comment.
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Re: Benign MS. Is it really benign?

Postby Cece » Mon Sep 24, 2012 7:41 pm

I'm going on my seventh year of being told I have benign MS. My understanding is that you can only really call benign MS to be benign MS after the patient reaches ten years post diagnosis without accumulating disability, and that this would predict the course of the next ten years.

Let's see, that's from the Mayo clinic study on benign:
http://onlinelibrary.wiley.com/doi/10.1 ... ated=false

Is your neurologist referring to your MS as benign?
It is possible to worsen clinically without it showing up as lesions on the MRI.
The goal with benign (in order to stay benign) is to stay below a '2' on the EDSS over many years.
I'm not familiar with ADEM, would that be better or worse? Agreed that it is confusing. Also you are in the CCSVI forum if you want to toss CCSVI into the mix. It helped me immensely to understand my symptoms as having been mild MS and severe CCSVI.
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Re: Benign MS. Is it really benign?

Postby David1949 » Wed Sep 26, 2012 8:50 pm

I was diagnosed with MS 16 years ago. I have never had a relapse during that time but my condition has slowly deteriorated to the point that I always wear a leg brace and usually carry a cane to walk. Sounds like your neuro has never heard of primary progressive MS. We (PPMSers) don't have relapses. We just get progressively worse. If your progression is slow say a prayer of thanks because it ain't always slow. For some folks it's fast.

May I ask how old you were when you were diagnosed?
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Re: Benign MS. Is it really benign?

Postby Luvsadonut » Thu Sep 27, 2012 1:25 am

Hi,
Like David I have also been on a slow downward spiral after been diagnosed 12 years ago. All the neuros which I have seen have all said that I am benign to which I reply "by definition you are not correct, how can I be benign when my health has significantly deteriorated since been diagnosed?". I feel relatively lucky as I still work full time, Im mobile enough for most things (I can walk around 1 km before stiffening up so much that I cant continue). As each persons MS is different from other people diagnosed and each persons regime/approach to well being is different from other people diagnosed I think that applying a label to the potential course of the disease is futile. Hopefully your disease activity will be minimal.

Darren
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Re: Benign MS. Is it really benign?

Postby cheerleader » Thu Sep 27, 2012 8:34 am

An important part of understanding MRI is knowing how your gray matter is doing. An MS MRI can appear quiet or without disease activity if there are no new lesions in white matter. Meanwhile, gray matter can be atrophying. This is not benign.... This is something which is often overlooked by neurologists. And this is what happens in progressive MS.

I asked the technicians reading Jeff's most recent MRI last May to compare his gray matter to two earlier MRIs. This can be done on standard MRI of 3Tesla. They looked at the width of the third ventricle, the thalamus, and brain stem, and noted that his gray matter appeared more normal on this MRI, and his third ventricle was smaller, and thalamus and brain stem now appear "plumper". This is a reversal of gray matter atrophy. I've written on Facebook about the importance of gray matter, how MS is much more than white matter lesions, and how to help your gray matter.
For those on FB:
https://www.facebook.com/note.php?note_ ... 5662517211
https://www.facebook.com/notes/ccsvi-in ... 1434857211
Progressive MS does not have white matter lesions, inflammation, and demyelination, yet disability continues. This has baffled MS researchers. Why would the disease progress, without the hallmark inflammation that we see in relapsing remitting MS? What changes when MS becomes progressive?
What if NOTHING changes, and we've simply been monitoring the wrong symptom....the white matter lesions. I've made the comment many times: MS obviously isn't only about white matter lesions, or else how could someone like my husband, with over 20 white matter lesions, still be hiking and biking, when our friend, with one lesion and progressive MS, is using a wheelchair?


Dr. Zivadinov has gone as far as to suggest we redefine disease pathogenesis by looking at gray matter:
http://www.biomedcentral.com/1471-2377/12/9

Most neurologists don't even consider gray matter evaluation--but we are learning that this is more and more important. Dr. Zamboni and Dr. Zivadinov suggest that this is linked to cerebral blood flow and perfusion.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3059278/

good luck to all pwMS trying to understand their own disease path, and be your own advocates. White matter is not the whole story...
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Benign MS. Is it really benign?

Postby EJC » Thu Sep 27, 2012 10:57 am

Instead of asking is Benign MS really Benign. A better question might be do I actually have MS?

Or even more controversial, does MS, in fact exist and I'm being fed a crock of crap by a medical system that simply doesn't understand what's wrong with me?

Consider looking into skeletal, neck or jaw issues. Even the Edinburgh Health Clinic, UK pathfinders of CCSVI are referring patients for jaw misalignment issues.
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Re: Benign MS. Is it really benign?

Postby Taurus » Thu Sep 27, 2012 6:13 pm

Well said. The neuros seem as confused as PwMS. The only thing that they don't to listen is CCSVI and its relation with MS.
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