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"mild prognosis" means what?

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    #16
    IMHO I think it's complete irresponsible for a Neuro to tell a patient they are "Mild" or "Benign". This disease is completely unpredictable and even the Neuro does not know what to expect next. Therefore giving a prognosis is impossible IMO. They should just say you have MS, live your life as normally would and take it from there. That way the patient expects nothing and the Neuro has not led the patient on. You know as well as I do that even if he says you are MILD you can wake up one morning and not be able to walk. That's just my thoughts.
    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

    It's hard to beat a person that never gives up.
    Babe Ruth

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      #17
      Originally posted by Waydwnsouth1 View Post
      They should just say you have MS, live your life as normally would and take it from there..
      Almost verbatim what my neuro said today. And added, "for now you're doing well. Keep doing what you're doing & we'll address symptoms if and as they come. Don't feel like you're giving up by trying the Provigil, feel like you're on control of trying something new to make your life better. If it doesn't, we'll try something else."


      I started this thread (kinda) to find out if my neuro might be holding out on me by NOT giving me a prognosis. But most of these answers lead me to think his approach might be best. He has been very proactive in doing baseline testing & ruling out other issues, but if it's really MS causing symptoms--he says take it day by day.

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        #18
        I'm one of those lucky? unlucky? people who was diagnosed with the "benign" label. I was diagnosed at 40 with very mild symptoms, and hadn't had many symptoms up until that point, but it's very likely I've had MS since my late teens. Fast-forward 14 years—and more than a few tries with various drugs—and that's not still the case.

        After cursing my doctor for not having the right crystal ball :-) I decided that his initial prognosis left room for hope, and allowed me to just live my life and have a lot of adventures, which I'm grateful for. I'm glad that I started on this unwanted journey more hopeful than dejected.

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          #19
          Oh, rmdc, how I enjoyed that. Fall over, neuro says, "good, good, don't worry, you're doing well." Miss your nose, "good, good, keep trying, that's good".

          Yeah, no, brother, I'm doing fantastic.

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            #20
            Originally posted by Thinkimjob View Post
            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.....
            DITTO What you said!!
            Live simply. Love generously. Care deeply. Speak kindly.

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              #21
              Yes, I have always been told my exam we good.. when in my opinion.. I was falling over, unbalanced and such.

              However, I ask the rest of you, when have you EVER been asked about your cognitive/memory issues? Or fatigue?

              I have lost my career due to COGNITIVE dysfunction! And never once has any NEURO ever asked me if I struggle with any cog symptoms. Why?

              So yes I am considered "mild" or was.. not sure any more. I guess my exams are "good" LOL

              Jan
              I believe in miracles~!
              2004 Benign MS 2008 NOT MS
              Finally DX: RR MS 02.24.10

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                #22
                I may have said this before, but it's always benign until it isn't.

                I read that years ago on someone's blog. Thought, oh no, that's not me, I'll be fine, but there was always this niggle at the back of my mind.

                The spider in the corner of the room, so to speak. (No longer a tarantula, just a very big huntsman.)

                And, yea, so it came to pass, and I saw that he was right (I've googled that site, but nothing at all in the last few years) and all was not good.

                Happy to live the dream, plus the spider, for more than 13 years. I knew what was likely to come, but wishin' and hopin', and dreamin' and a prayin' gets you through the night.

                But reality bites. Thirteen years wasn't too bad.

                I hope it bites much later for all of you.

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                  #23
                  My neuro told me that I have mild MS. I don't think she's irresponsible. I don't really think it's a load of crap either. My neuro is actually quite brilliant. Before I saw her I saw 2 other neuros. One teaches Neurology at a Medical school. I also saw 2 neuro surgeons, one of which is the head of Neuroscience at a large hospital. All of them told me the white matter on my brain was from high cholesterol. My new doc is the only one that thought to order a follow up MRI which showed new lesions just 6 months after the first one, confirming what she suspected after looking at my MRI for five seconds.

                  I know that I do have MS and I know that it could escalate. She never said that it couldn't or wouldn't. She said that it might not. She has seen patients though whose symptoms were kept at "mild" with steroid treatment and by keeping Vitamin D levels up near the top of the range. She also said that it's not unusual for people who get MS at my age (54) to have "mild" MS. The only symptom I have or have ever had is Trigeminal Neuralgia.

                  She also told me there is a good chance that I had an MS event instead of the full blown disease.

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                    #24
                    Originally posted by Deestar View Post
                    My neuro told me that I have mild MS. I don't think she's irresponsible. I don't really think it's a load of crap either. My neuro is actually quite brilliant. Before I saw her I saw 2 other neuros. One teaches Neurology at a Medical school. I also saw 2 neuro surgeons, one of which is the head of Neuroscience at a large hospital. All of them told me the white matter on my brain was from high cholesterol. My new doc is the only one that thought to order a follow up MRI which showed new lesions just 6 months after the first one, confirming what she suspected after looking at my MRI for five seconds.

                    I know that I do have MS and I know that it could escalate. She never said that it couldn't or wouldn't. She said that it might not. She has seen patients though whose symptoms were kept at "mild" with steroid treatment and by keeping Vitamin D levels up near the top of the range. She also said that it's not unusual for people who get MS at my age (54) to have "mild" MS. The only symptom I have or have ever had is Trigeminal Neuralgia.

                    She also told me there is a good chance that I had an MS event instead of the full blown disease.
                    The beauty of an open forum is we can always agree to disagree.

                    Because the other two docs were incorrect doesn't mean the one who was able to quickly diagnose you is correct about everything. MS is unpredictable by nature.

                    Like many of us say: It is only mild until it isn't.
                    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

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                      #25
                      Originally posted by Jules A View Post
                      The beauty of an open forum is we can always agree to disagree.

                      Because the other two docs were incorrect doesn't mean the one who was able to quickly diagnose you is correct about everything. MS is unpredictable by nature.

                      Like many of us say: It is only mild until it isn't.
                      Yes, I agree that we can agree to disagree. That's what I was doing.

                      My new doc certainly doesn't know everything and there are sure to be things that she will be wrong about. I just don't think she was being irresponsible in giving me my diagnosis though. I also don't believe that it was a load of crap. Right now my MS is mild. I have only ever had one symptom. Her saying that it is now mild doesn't mean she is saying that it someday won't be....just that it is, right now, mild.

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                        #26
                        There is a formal neurological definition of "benign MS" - you have been diagnosed for 15 years and have a disability score of less than 2 (I think those are the numbers but am not certain). It is not a prediction at all, just a statement of whether I fit the definition, which happens to be the case for me.

                        My first relapse was optic neuritis in 1975, diagnosed by a neuro-ophthalmologist. When ON recurred a few months later, after my family doc had done the requisite "rule out" work-up, the diagnosis was confirmed, long before MRI, and without spinal tap. And here I am almost 40 years later still working full-time and functioning reasonably normal as far as visible signs.

                        My neurologist happens to believe in the "burn out theory" that after a while the number of relapses decreases as the immune system becomes less active with aging. Because of this, as well as the fact that my MRI's are unchanged since 2002, he thinks that I am unlikely to abruptly progress and worsen. We both know there are no guarantees, so I am planning on continuing DMT indefinitely He does inquire about my cognition because my work is highly cognitive in nature, one reason for his strong recommendation I continue DMT.

                        If my neurologist were to say I have "mild MS" I would interpret that as "Right now you are not severely disabled by MS." I wouldn't think of it as a guarantee I'll stay this way. No one can predict our futures, or anyone else's for that matter.

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                          #27
                          a feel for the moment and person

                          I agree with alot of you.

                          It is mild or benign until it isn't.

                          We can agree to disagree.

                          For the most point, I believe that a doctor not telling the patient the whole story is a load of crap.

                          But, having worked in the healthcare field, there are certain patients that can not handle the full truth. My sister is one of them. She would be a person that I would tell her she has a mild or benign anything. Because, she needs all the motivation and positive that she can take.

                          Neurologists may not know the patient as well as the primary doctor. Sometimes they have to go with what is called their gut insticts. They do the best that they can, with the education and experience that they have.
                          God Bless and have a good day, Mary

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                            #28
                            If a doctor tells a patient that they have mild MS, that doesn't necessarily mean that they aren't telling them everything about the disease.

                            Before I went to my first visit where we discussed MS I researched it. I learned about the different types of MS, how the disease can progress, that symptoms can come on suddenly.

                            During the visit I asked questions and she answered them all. I never got the feeling that she was withholding information. She told me my MS is mild because right now it is. I have no lesions on my spine. The optic nerve hasn't been affected. No issues with my legs. Just the TN.

                            She never once said I have a mild case of MS that won't ever progress. She only said that it's possible that it might not. She prescribed steroid infusion and a follow up MRI in 3 months. At that point if I have new lesions or any new symptoms then it might be time to be less hopeful that the mild diagnosis will hold up.

                            Either way I will have a positive attitude and do whatever I have to do to keep the symptoms manageable. I don't feel that her "mild" diagnosis was given in attempt to keep from scaring me into hopelessness. I already knew what might be in store for me should the disease progress.

                            *I think it's good to relate our experiences even if we don't agree with each others opinion on them.

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                              #29
                              Originally posted by mjan View Post
                              Yes, I have always been told my exam we good.. when in my opinion.. I was falling over, unbalanced and such.

                              However, I ask the rest of you, when have you EVER been asked about your cognitive/memory issues? Or fatigue?

                              I have lost my career due to COGNITIVE dysfunction! And never once has any NEURO ever asked me if I struggle with any cog symptoms. Why?

                              So yes I am considered "mild" or was.. not sure any more. I guess my exams are "good" LOL

                              Jan
                              Jan,

                              I am very fortunate that my practitioner asks. This is one of the major issues for me. I am like you work in the healthcare field and it may not be as noticeable, because, we can still function. But, if you ask me some higher functioning questions it is gone.

                              I have done the neuropsych test to show the loss. We recently changed meds to see if that will help over all.
                              God Bless and have a good day, Mary

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                                #30
                                I think some of us are talking about two different things. A snapshot in time vs prognosis. I was referring to the OP specifically asking about a "mild prognosis".

                                Considering the word prognosis means:

                                the likely course of a disease or ailment

                                I continue to agree with those who wrote there is no way anyone can predict with any amount of certainty the outcome of a particular case of Multiple Sclerosis.

                                Saying "your MS is mild at this time" is totally different than saying "you have Mild MS", imo.
                                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

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