No Benign MS

[monotreme]

Hi forum.  I also wanted to separately mention that NYU has a large sign on the wall of the MS center.  It states that they don't think "Benign  MS" actually exists.   MS is not benign according to them.   Even "Mild MS" can evolve to a more damaging form of MS.

And, although rare, you can have MS with no visible brain lesions on a MRI.  But we all know that, right??

And early treatment is one way to stop the MS in its earliest stages.

So Quix is once again correct in her information.  NYU is a world renowned MS center, and its director is well known.  More MS centers and neuros can learn alot from NYU.

Elaine

[LivingInPainTooLong]

I see that this was posted 4 years ago, but I am assuming that the opinions or facts have remained....I am a 49 year old female recently diagnosed with "Benign MS". I do not understand this diagnosis because how can you have such a disease as MS and it be benign? I think of the fortunate people who are diagnosed with Benign Cancer, which is then removed, well how do you remove MS? You can't! My mother had MS, she passed away from complications of Pneumonia in 2006, and my brother (47) HAS MS and is currently in remission. He has RRMS. I went numb from the belly button down in February 2012 and was for the most part in a wheelchair in the hospital because it hurt so much to walk. I had a pre-existing condition from an accident at my work as a CNA in a Nursing Home and have L5 and S1 torn discs with horrible chronic pain for going on 6 years now...I told the Neurologists NOT to have tunnel vision, based on my family history, of Multiple Sclerosis....I was 100% positive that I did not have MS and came to find out that in fact I did have MS! But my MS doctor said that I was one of the "lucky" ones to have what they call "Benign MS". Well, I don't feel lucky at all....more like a ticking time-bomb! Either I do or I don't have MS...which is it? She didn't even want to put down that I actually have MS because she said that my insurance rates would sky-rocket! Well I am already clinically Disabled and living on Disability because of my very much impaired ability to do maybe 50% of what I used to do because of my back injury. So that didn't make sense either....I live on Medicare and I regained all of the feeling in my lower extremities but still have a little numbness in my feet, especially worse when I take hot showers! I am so confused. She said she was absolutely positive that the partial paralysis that I endured in February was not related to my MS, which brought me to make a call to my lawyer, since the temporary partial paralysis had to have something to do with my back injury.....still no answers from my Back Doc or my lawyer or anybody.........please HELP!!!! My name is Lori
You can email me at ***@**** or reply here....thank you so much! And where can I find more help on this whole phenomena?

[jdhecaj]

On another board one member expressed it best. There can be benign MS symptoms but there never is benign MS.

[HVAC]

To Forum

For two years I have had different Neurologists saying I have MS but they all say they are looking for something like ON or real weakness, i.e. not being able to use legs or arms, before I can get DMD's.  I have been to four now. I have had three abnormal MRI's, an abnormal VEP (which the Dr. I see now says is a test not used any more by MS Specialists). My reflexes are hyper on one side and hypo on the other.The Drs. all say I have MS symptoms. Everything else has been ruled out. I am still waiting for LP results. I saw the webcast on invisible MS and I feel that was right on target. I do not know if I should keep having tests every six months or walk away until I have the symptoms the Neurologists will say "Now thats real MS". Part of me thinks since they won't treat me they will say it really is not MS.
  Alex in N.C.

[jed9999]

Here are a couple articles I remembered about Benign MS. My former neuro was still calling my MS Benign after 36 years--ridiculous! I think there SELDOM is such an animal!

1. http://www.medscape.com/viewarticle/564612 ---------------rom 2007

2.
I may have had Benign by some definitions after 10-15 years--but my neuro didn't live with it either!

3. Benign may not be so Benign---http://www.sciencedaily.com/
This is what I thought of when my MS went bad after 36 yrs when I had 4 months of bronchitis infection!

4.http://www.mult-sclerosis.org/whatisms.html
excellent article also explaining how MS does its damage
5. there's quite a bit here about Benign MS:

http://ehealthforum.com/

6.There's more here from Revolution Health::

http://aolsearcht9.search.aol.com/aol/search?query=benign+ms&s_it=keyword_rollover

There are a few more listed if you do a search on Benign MS   Jane in Indiana

[jensequitur]

I'd love to see studies done on people that are diagnosed with so-called 'benign' MS, and have them measure brain atrophy to check total volume.  

[monotreme]

NYU had a large poster taking up an entire wall with their opinion and backing it up with facts.

When we are there again in November, I will see what I can pick up.

I am so glad that they have the influence they do and the courage to take a stand to help people get early treatment.

Elaine

[Quixotic1]

Thank you for the very kind words and the validation.  I have come to many of my opinions through my reading and it really is nice to see that a major (and huge) internationally renowned MS center backs up what I've been saying.

I do not believe that anyone can ever say that their MS is "Benign" unitl the very end when they can see whether it stayed that way or not.  Certainly, some people have a benign course, but there is no guarantee that it will stay that way.

The pushing of the "Benign MS" concept is coming out of the Mayo Clinic who state that up to 15% of people with RRMS have a benign disease and they prefer to withhold treating with the DMDs in those people.  My problem with this is that the DMDs have been shown to have their greatest effectiveness as early as possible in the disease.  If you wait to start them, then later if the disease shows itself to be more aggressive, you have lost that window when it could have been slowed more effectively.  The Mayo's other concerns are economic - "Why use a med that is so expensive if you might not need it?" and behavioral/economic, "People with less seriousl disease are "often" less compliant with taking the DMDs, so they can be "wasted.""  What?  So don't try them?  Poppycock!

Another way of viewing this notion that there is no "Benign MS" is to say that there is no "Inactive" MS.  The notions are the same.  I'm glad to see a major MS Center making a stand on the issue.

Recently I wrote about a study that looked at older people who had had a benign course to their disease.  What they were looking at was the cognitive function.  Most of the disability scales deal primarily or only with the motor function, but we all can argue that the cognitive is every bit as important or moreso, than being able to walk.  This study found that upswards of 40% (I'll have to look it up) of people with "benign" MS were significantly impaired with cognitive abilities.  Something like 12% were severely impaired.  Wow!  How can we say that they had a benign course if this was happening to so many of them?

Elaine - did the NYU center have any brochures or handouts talking about this issue?

This is something Rena can bring up to her Evil Neuro.

Elaine, thanks again.

Quix