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    "mild prognosis" means what?

    Starting a new thread, rather than hijacking another one.

    I've seen a few people mention that they were given a prognosis of "mild" or "benign" MS. I'm confused by that, because I thought MS was so varied. I've read about mild or benign CASES of MS, based on disability, progression, or lesion load.

    But what do they point to in order to know what the future holds?

    If you've been given a prognosis of mild MS, can you help me out? Did your neuro have clinical findings pointing to a more mild future course? Or was he/she just looking at the normal risk factors like age, sex, RRMS, and making a statistical evaluation?

    I'd give a lot to find a neuro who could/would give me an expected disease course. Mine basically says it's not bad now, but MS is unpredictable, past performance doesn't guarantee future success, YMMV, yada yada yada.

    #2
    Hate to say it, but it's a load of cr*p. They, doctors, neurologists, MS specialists, really don't know.
    That's not their fault. No one does.

    I was told when first diagnosed nigh on 18 years ago, that if I lasted ten years without motor symptom trouble (limp, weakness etc etc), I could say I had benign MS (plus 30% bonus years for dmds).

    Wouldn't ya know, bang on 13 years, it all went pear-shaped.

    As soon as you start limping, this thing is no longer benign.

    Comment


      #3
      Many people labeled with benign MS change after a period of time. Some don't and truly remain benign.

      When I was diagnosed, I had one symptom, two flares of that single symptom, and very few brain lesions. I was diagnosed at UCSF and they told me at the time, it was uncommon to actually see someone in the initial stages of the disease. EDSS of 1. Of course, that would no longer be true with the advances in MRI Technology.

      At the time they used 10 years as the mile marker...it might be 15 now. Bottomline is, I went almost seven years with no MRI changes, no flares...no nothing. I was one of those people you see in brochures running marathons. I was not even on a DMD. I was benign. I had MS...but nothing was happening. Nothing...nada...

      Of course that changed and I went from Benign, to very active MS...and it was overnight. Lesions started forming and I had to start DMDs. Went from an EDSS of 1 to 2.5 to 6.0 and now I am back to 3.0. I am certain that will go right back up once I stop Tysabri.

      I sometimes read these boards and swear none of us have the same disease. Your flavor of MS is as unique as your fingerprint...and only you and your Neuro can determine what is right for you.

      Benign does exist. But just like RRMS turning into SPMS...it will most likely change. And if you are benign...enjoy every minute of it and hope for better drugs in case the MS rears it's ugly head.
      Katie
      "Yep, I have MS, and it does have Me!"
      "My MS is a Journey for One."
      Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

      Comment


        #4
        This makes me crazy, not knowing what's going to happen to me. Or even what's "likely" to happen to me. And I think you'll find as you read more forums and meet more MSers that our neurologists are widely different in how they think about and treat the disease.

        This article from Prof. G. over at the MS Research blog came closest to answering my real questions.
        http://multiple-sclerosis-research.b...-group-do.html

        I personally have mild to moderate disease, according to my neuro, and have had no disease activity since diagnosis and Copaxone started more than 2 years ago. Nonetheless, articles like this as well as experiences shared in threads like this one have convinced me that I should take the most aggressive treatment I can get while I'm still in pretty good shape. Then, hope for the best.

        Comment


          #5
          I'm not going to debate the existence of a "mild course" of disease here, but I do think it's important to consider why neuros might be telling MSers that their disease course will likely be mild at outset.

          First, many MSers do have a mild course of disease, and the stats play out conclusions like "you likely won't end up in a wheelchair," etc.

          Second, the neuro is in a tough position at diagnosis. What that doctor tells the patient likely colors the way that patient views his or her life indefinitely. The neuro can't fix MS, he/she can only treat symptoms and delay onset of disability. The neuro's job isn't to cure MS, then, but to improve the patient's quality of life. Perhaps a young person with minimal symptoms who is DMD compliant doesn't need to hear that he /she has a bleak future, or 5 good years, or is in for a nasty roller coaster of a disease. Maybe what he/she needs to hear is to stay healthy and not to let MS steal one minute more of life than necessary.

          I was told I would have a mild course of disease too, and frankly, I don't care if that's true or not. That prognosis gave me the courage to do my best at work, land a much better job, improve my physical health dramatically, and it still gives me hope for a bright future.

          Comment


            #6
            The term "Benign MS" is an artifact - I don't believe it's even in the new nomenclature (there are new names for things in an effort to clear up some confusion). The truth is that your Neruo can't tell what's on the horizon and shouldn't tell you it's all bad or it's benign, unless he or she can see terrible things on your MRI or see super quick progression. In that case, you'd know it anyway.

            Telling a patient they have Mild MS is IMO, irresponsible. Enjoy that, but still do your best to enjoy life with the possibility it could go "pear shaped" (Queen's English for going all wrong) at any time.

            Comment


              #7
              The link Mable posted is the answer I was going to go with. There are certain features of the disease that make it more likely that you will have a milder experience with MS, but it's still a crap shoot. People with everything in their favor can have quick progression, and people with terrible odds can do just fine, all things considered.

              But, if you are like me, and you want data to latch onto and mull over, open that link and it will probably give you what you are looking for.

              Comment


                #8
                The truth is that statistics are not meaningful for the individual unless you're choosing a drug for cancer, etc. Otherwise, it's like knowing the average height in your zip code - it doesn't make you taller or shorter, even if it's generally true.

                BTW, I hit 1, 2, 3, 4, 5, 11 and 12 and I am still mild after 5 years, so who tknows?

                Comment


                  #9
                  I think that many of us who think (or are told) we have "benign" or "mild" MS might actually just be in the earlier stages of the disease.

                  When I was diagnosed, it seemed that a lot of folks had een diagnosed with this kind of terminology: "diagnosed this year, but probable symptoms dating back 10 years or 20 years."

                  With imaging and better awareness, a lot of us (like me) are being diagnosed after the very first flare. Earlier generations of MSers might have thought they had a mysterious episode of numbness that mysteriously resolved, and then a decade or more of "not being sick" until the next flare which would lead to diagnosis.

                  I'm not outwardly sick and have had no flares and have had stable MRIs in 8 years, but I'm still treating aggressively. I feel lucky, but know I'm not that lucky.

                  Comment


                    #10
                    No shortcuts

                    There really isn't much to add to the above posters. The randomness of the disease precludes an accurate prognosis. I hope your disease course remains minimal, but by definition MS is a chronic, progressive disease. In an ideal situation you would take good care of yourself and live your life to the full. Your lifestyle will either help or hurt you along your journey. It's a basic "Garbage In, Garbage Out" philosophy where not exercising is better than not exercising. Eat well, sleep well, exercise both mentally and physically. Avoid stress, smoking and excessive drinking. Even the MS medications give you a percentage change improvement and not bullet-proof protection.

                    Today, the diagnosis is new and it will be new for many months to several years. Some people grief shorter or longer and they are not wrong, just different. It's normal to be overwhelmed, scared, anxious, angry, etc. For people with control issues (like me) the unknowns of MS can really send you into a tail spin. I do believe how you respond to the disease does matter. Some people will miss their entire present by reliving the past or worrying about the future. Instead, try to let MS be the reason you decide to live a better life. Love harder, kiss deeper, hug tighter, laugh freer, smile bigger ... no regrets. It's not always easy, and sometimes may seem impossible, but this is the life you have to live -- live it well.

                    Comment


                      #11
                      'Mild' means NOTHING. It may have some meaning to your doctor but MS is still a progressive disease with little or no treatment and no cure. Your doctor knows that but I'll bet he didn't expose those facts. So you ought to start thinking about ways to take care of yourself. Good luck. I hope that someday soon we will not have to post about this stuff.

                      Comment


                        #12
                        Originally posted by Mable View Post
                        This makes me crazy, not knowing what's going to happen to me. Or even what's "likely" to happen to me. And I think you'll find as you read more forums and meet more MSers that our neurologists are widely different in how they think about and treat the disease.

                        This article from Prof. G. over at the MS Research blog came closest to answering my real questions.
                        http://multiple-sclerosis-research.b...-group-do.html

                        I personally have mild to moderate disease, according to my neuro, and have had no disease activity since diagnosis and Copaxone started more than 2 years ago. Nonetheless, articles like this as well as experiences shared in threads like this one have convinced me that I should take the most aggressive treatment I can get while I'm still in pretty good shape. Then, hope for the best.
                        I think this is a really good article and have bookmarked it. Thanks for sharing.
                        Katie
                        "Yep, I have MS, and it does have Me!"
                        "My MS is a Journey for One."
                        Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                        Comment


                          #13
                          Originally posted by abeautifullife View Post
                          I'm not going to debate the existence of a "mild course" of disease here, but I do think it's important to consider why neuros might be telling MSers that their disease course will likely be mild at outset.

                          First, many MSers do have a mild course of disease, and the stats play out conclusions like "you likely won't end up in a wheelchair," etc.

                          Second, the neuro is in a tough position at diagnosis. What that doctor tells the patient likely colors the way that patient views his or her life indefinitely. The neuro can't fix MS, he/she can only treat symptoms and delay onset of disability. The neuro's job isn't to cure MS, then, but to improve the patient's quality of life. Perhaps a young person with minimal symptoms who is DMD compliant doesn't need to hear that he /she has a bleak future, or 5 good years, or is in for a nasty roller coaster of a disease. Maybe what he/she needs to hear is to stay healthy and not to let MS steal one minute more of life than necessary.

                          I was told I would have a mild course of disease too, and frankly, I don't care if that's true or not. That prognosis gave me the courage to do my best at work, land a much better job, improve my physical health dramatically, and it still gives me hope for a bright future.
                          Although I think your positive attitude is admirable I personally find it condescending and cowardly that providers would give MS patients a prognosis that is not supported by evidence. It has always irritated me that for so many years women with MS were not educated on the risks of passing on MS to their children. It is not their right to candy coat things to protect me from what might happen. I want to know and have a right to know.

                          Personally I can't ever decide if the provider either doesn't have the kiwis to be honest or is so clueless that they think they can actually predict it, either way this isn't a provider I would continue seeing.

                          As someone who knew people with MS before I was diagnosed and now work in health care I have no delusions about how horrific the course of this disease could be but that didn't stop me from moving forward with my career and life in the meantime.
                          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                          Anonymous

                          Comment


                            #14
                            I've come to think it's the neuros just trying to give some positive feedback to the patient.

                            Many people with RRMS have a mild onset, and it can last for years.

                            A good saying about "mild" MS is "My MS was mild until it wasn't."

                            Not having mild MS is not doom and gloom, it doesn't mean you're going to be walking one day and wake up the next and be confined to a wheelchair (although that has happened to some.)

                            But back to the neuros, I always chuckle when I'm taking a neuro exam, and fail miserably, their reaction to whatever you do, however you perform the test is "Good."
                            "Walk heel toe" and you fall over having the neuro right you and he says "Good." "Touch your finger to my finger", and your hand starts waving like you were on a parade float, and he says "Good." This one is particularly funny to me because I have cranial nerve involvement, so the neuro says "Stick your tongue out" and I open my mouth, but can't get my tongue to move out, and the neuro says, "Good." It is a hoot if you think about it, but I know they aren't meaning that you did well on the test,just that you followed their instructions. Besides that, what are they going to say when you fail a neuro test, "Bad" ?

                            My neuro always says I'm doing well. And I guess I am if you don't count the fact that I have a pump implanted in my abdomen so I can move my legs, or that even though I'm mobile, it's for a short time, and limited steps, or that I dare not go outside during the summer, and have to weigh every expenditure of energy for it's value, i.e. should I or shouldn't I, etc. etc. etc. But yeah, I am doing well when compared with some folks who have much more severe disability...but I'm not doing well compared to as Richard Cohen calls them, "the chronically healthy."

                            And I've got to cut the neuros a break...they want to be the bearer of good news, not bad, and I can understand that. One more thing, in all the doctors I've ever seen, I've only had one that actually acknowledged that MS was a hard row to hoe. Not that I want to hear those words at every appointment with a doctor, but I think we all need to be validated that what we're dealing with is no walk in the park and that we're doing a good job dealing with it.

                            Well, thus ends my opus...sorry for the rant.

                            Comment


                              #15
                              Thank you Jules for the new euphemism. I love it!

                              I agree that the provider hiding the facts is condescending, patronizing and overall wrong, but I am an adult.

                              I was diagnosed not long ago in my mid 40's. I can trace my first likely ms flares to my early 20's. Based on statistics, I have likely enjoyed 'benign ms' for 18 or so years. (14 if you subtract the years of confusing symptoms that finally clarified enough to get me diagnosed. )

                              How would I have responded if I were diagnosed at 21-22 and told what a crappy disease this can be? I took risks. I lived life. I definitely made choices I regret and I wish I could go back and be somewhat more careful. But only somewhat. If someone had told 21 yr old me I had ms, I might have just put my head under a pillow and tried to not wake up and wasted 14 or so good years.

                              At this point, my neuro has tried to be encouraging and hopeful and I come back with tough questions. He can't answer with a straight face.

                              I do my own research. I find it more hopeful to make plans for how I would cope with worst case scenarios, and then maybe I will be surprised on the up side by a milder course. I am definitely trying to implement whatever I can do to mitigate this. I do my best, but I never forget that I am likely outnumbered and outgunned. I would rather not be blindsided again... so I admit the odds and the facts of what I'm already living with, but I do hope.

                              To the original poster... if you read this far, benign ms means having ms that is mild... that doesn't disable you, the most extreme version is the type they find by autopsy in people that never knew they were sick. But in population studies, 10 % or so who are diagnosed will not become disabled before they die of old age.

                              I think benign ms is promised to far more of us than that, percentage wise. I wonder if neuros think that if it doesn't really hit you before mid 50's than that is benign, or if they think that you're better of not knowing or fearing before you experience disability.

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