such a thing as "benign" MS?

[Ufrustrated2]

i searched and and saw a few posts on this but i wanted to ask the question to narrow this thread to just that: can MS be benign? and when a doctor uses that phrase, is that old school or what ??

[Ufrustrated2]

Thanks for the reply Linda. That too is exactly how I think about it. Ditto

[truelove47]

Hi Again

I don't think i answered your question correctly.  I do not believe there is such a thing

as benign ms.  I also agree it is a copout.  I feel anyone who is even suspected

of having ms should be on one of the drugs.  I would not like living my life to chance

If there is anything out there to help, I will go for it     be well Linda dx'ed

[Ufrustrated2]

i got it now. and i concur wholeheartedly. wanted to make sure i was on the same page - had thought so - . thanks for the follow up!

i'll check kmil1999's post.

many thanks!

[essdipity]

See kmil1999's post this evening as a perfect example of what I'm talking about.

ess

[essdipity]

Benign up to now means that the illness has not ---yet--- seriously impacted the patient's life, whether with pain, mobility issues or other effects. That doesn't mean it won't. Therefore, labeling MS benign is dangerous. Who can predict what will happen? No one, not even the all-knowing arrogant neuros who have never experienced one day of MS symptoms.

Many MS patients don't quite fit the criteria, or their lesions are not in classic places, or they are 'too old,' and on and on. We have loads of such people on this forum. Rather than stretch their minds a tiny bit, their neuros offer whatever lame excuses that come to mind: 'You are focusing too much on your body,' or 'You're just depressed.'

My last neuro, who didn't even look at the MRI images but relied totally on the radiology report, suggested I was anxious. The radiologists, seeing my age, suggested it was ischemia. And on it went.

I'll be extremely plain: 'Benign MS' is a copout, There ain't no such animal until the final analysis. And calling a patient a malingerer is easier than saying 'I don't know what's wrong with you.'

ess

[Ufrustrated2]

let me see if i understand you properly;

"not much" as in the "mild MS" realm i have heard stated - whatever that really means.

"benign up til now", not sure i follow on this.  thx

if the folks who have these invisible symptoms and have the clinical (quantitative data via images & serum), why would a neuro think they are malingering - generally speaking?

i agree about your cancer statement, that is exactly the scenario i analyzed in my head too.

[essdipity]

I totally concur that 'benign up till now' is the most that can be said for this designation. That can change on a dime. Withholding drugs based on this is like saying let's wait till the cancer gets worse.

But there's another side of this issue too. There are a lot of lame-brain neuros out there whose definition of benign seems to be 'still is conscious and can walk fairly well.' To these idiots, many serious effects of MS are as nothing. And if the symptoms are invisible---fatigue, vertigo, paresthesias, other pain, cog fog, etc etc---well then, the patient may as well be faking or malingering from the perspective of these neuros. They reserve 'benign' for the ones they do believe have MS, but 'not much.'

ess

[Ufrustrated2]

that may in fact be true, and I do not have the education to dispute that.

yet for the many people who have positive MRIs for lesion(s)[demyelinating disease] and LPs that consistently return O-bands, and a historical documented history of symptoms, with those particular facts, could one really believe that is a benign disease?

just thinking/questioning out loud here

[truelove47]

Hi,

I was told by my  doc that a lot of people can have lesions in their brain, but for some reason they do not activate.  They are silent.

Also, he told me some people can have 1 attack and never have another

There is no rhyme or reason, they just don't know why

These lesions are only seen on autopsy (sp?)   Go figure  

I don.t know if this is old school thinking or not                Linda

[HVAC]

I am on Copaxone now I am happy to say.

[Ufrustrated2]

HVAC,

wait & see, that is an alarming tactic with regards to an often silent progressive disease! gee!   why even do LP's & MRIs then?  what, just wait until one is broken down so much mentally and physically, then call it?  the dark ages in our current age.

[HVAC]

I could spit when the Benign c--p is used. I think my  4 Neurologists let my disease progress needlessly because they were waiting for things to get bad. Damage can be done with out symptoms. Can a Doctor predict the course of any ones MS? I would give anything if they had started me on DMD two years ago. In the future the wait and see method will be called malpractice.

Alex

[Ufrustrated2]

Lord, I hope they don't kick me out, the org I go to is the only place I can go since I do not have health insurance currently.

from what research I have done, i couldn't find any truth to "benign MS" either.

i did see where new research/theory is that MS may occur due to a viral episode and/or trauma. way back when, after a back injury, my CSF was inflammed with something that caused the WBC to escalate, i've had the O-bands, brain lesions, and problems ever since. so "benign", i don't think so.

thank you LuLu,

[Lulu54]

When a neuro uses that phrase, in my opinion he/she thinks that they are god and know all.  It is impossible to label MS benign until after we die - the full course of our disease will not be known until we are on the autopsy table.  

Unfortunately, the label benign seems to be popular when there is a concern as to the cost of treatment. .... I have to wonder if the NHS invented that category of MS or if they picked it up from somewhere else.

Challenge your doctor if you are labeled benign.  What are they going to do... kick you out?

Lulu