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    #1

    I need your words of wisdom

    I was at a meeting, not an MS meeting, and this person came up to me and asked me if I had been "officially" diagnosed with MS. I normally don't talk about myself in public. So will you please help me with a response for this. Oh, by the way, I was officially diagnosed with MS five years ago, and due to the location of the lesions, was told I had 45 days to live. So I'm either a fighter or extremely stubborn, because I'm still here.
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    #2
    That is one very irresponsible doctor! To tell you a specific number of days? No one could possibly know that. I hope you never went back to that one.

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      #3
      Just out of curiosity, what did you say? My first instinctive response is usually the right one as far as this goes...

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        #4
        I guess my response would be based on how much I feel comfortable telling them my personal info. I might tell a friend more info than someone I just met at a meeting. I'm in limbo, so most times I don't have any new info and leave it at that.

        Regarding your doc telling you that you have 45 days to live... Nixie is right. Don't know why they would have told you that? MS is by no means a terminal disease.
        Good luck

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          #5
          the doctor was correct

          NixiePixie, the doctor is correct. I am glad I was told the truth about my diagnosis. And actually with the little I have accomplished these past five years, he is on the mark correct. For the person at the meeting, I didn't know how to respond to that, because I don't like to make people sad. I didn't know if they were looking for assistance for someone, etc. So I gave them my doctor's name and phone number

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            #6
            Originally posted by nixiepixie View Post
            That is one very irresponsible doctor! To tell you a specific number of days? No one could possibly know that. I hope you never went back to that one.
            Completely agree!

            To answer your question, Marie, it's up to you as to how you want to respond. I never got that question, even when I had completely invisible symptoms, so I have no personal experience with this.
            “The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
            Diagnosed 1979

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              #7
              Marie12.... I apologize for showing ignorance, but just where are the lesions that the Doctor said would end your life in 45 days? I was dxd with lesions in the pons, and it was explained to me that the pons is part of the brain-stem. The brain stem controls all the autonomic functions..blood pressure, temperature, respiration, etc. I now have permanent damage there, but not one Doctor gave me a time limit. I am most curious as to where your lesions are, that the Doctor felt your time was so limited.
              MS, it's a brain thang!
              Proud to have served, U.S Army WAC

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                #8
                I'm confused...

                A time line of 45 days left, 5 years ago, wouldn't be correct. Unless you are a ghost! Are you posting from beyond? Spooooky!

                I could understand saying that something could shorten your life, like cancer could leave you with just months, or in my case, a large plaque in my neck could leave me paralyzed if I had a bad flare, but 45 days is oddly specific. Can I ask how he came to that number?

                As for telling people, I only really told people after my last flare. I couldn't use my right arm, my hand clawed up, I couldn't write or hold a pen, and I had the IV port thing hanging out of my wrist. There was no hiding all of that. And I still had to work. I work with a lot of younger people, late teens and early 20's. They ask questions, they don't know what MS is, and I've just been pretty matter of fact with them. I told them what was going on and answered their questions when asked. They still ask me stuff even though I haven't shown any signs of the flare for a couple of months now. I actually prefer talking to them rather than older people. The older ones are all "oh, I'm so sorry, how are you doing" with that sympathy face that makes me feel like a ticking time bomb. Sympathy face is the worst.

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                  #9
                  Like others have said. It depends on how well I know someone.
                  Acquaintences get very basic responses. Friends get a more detailed response.
                  People at work, although very nice and supportive, always ask me "are you feeling any better?"
                  I would like to say "It isn't a friggin cold, I will never feel better", but I usually just say "about the same".

                  They just don't know any better.

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                    #10
                    I hope you got a new Dr.!! What a "dork".
                    I'm not ashamed of my MS I've been DX. for almost 11yrs now. I would just tell that person & than ask how long they have been DX. If they say they don't have MS,just say "OH sorry I thought you wanted to share stories".
                    But some people mean well but just don't know how to express themselves.
                    God Bless Nona Judy

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