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    New to the board too.

    My name is Patrick, I too have MS, all of which is in my brain affecting my balance, speech, memory, and concentration. I was told that I was in the super rare to get MS category, being a Male below the age of 30... humbug, why couldn't I have beaten the odds playing the lottery of something?

    Some symptoms that some have listed are several of the symtoms that I deal with regularly. Though I am new to my medication (just 2 monthly doses so far and another next week), I hear stories of tysabri helping people to the point regaining motorfunctions and thought processes. I started on Avonex, the weekly injections that my insurance said I had to take for a year before trying any other. I couldn't stand the weekly fevers and the head aches, the weekly body aches, the constant nausea that came with it... well that was no fun. hooray for medications like tysabri.... though they did say that with this medication it was a 1 in 10k chance of a brain virus but is totally worth the risk.

    I myself was just diagnosed in 2011, just shy of christmas and when I was I was told that I had the desease for about 5 or 6 years and was starting out in stage 2, I fealt nothing but terror. I just thought I was a bit clumsy until it all of a sudden started affecting my speech. I was told that if it would have been caught when I was in my twenties that I would still be in stage 1 and no doubt with the modern medications never would have progressed further, but it's like they all say, hind sight is 20/20.

    #2
    Hi MS_ cant_beat_me and welcome to MS world

    I'm not sure the neuro you are seeing knows about MS too well.

    I was told that I was in the super rare to get MS category, being a Male below the age of 30
    Although men are in the minority of those diagnosed with MS it is not "rare" for men to be diagnosed. Until several years ago MS had always been referred to as a "young persons disease, diagnosed between the ages of 20 & 40.

    At age 30 you "fit" into that category.

    I was told that I had the desease for about 5 or 6 years and was starting out in stage 2, I fealt nothing but terror. I just thought I was a bit clumsy until it all of a sudden started affecting my speech.
    I have never heard the term "stage 1 or stage 2" used The only thing I can conclude your neuro maybe referring to is "stage 1 as Relapsing/Remitting and "stage 2" as Secondary Progressive.

    I was told that if it would have been caught when I was in my twenties that I would still be in stage 1 and no doubt with the modern medications never would have progressed further,
    Your neuro is wrong and should never have given such false information No neuro can determine how or if a person will progress simply based on age or how long you may have had this disease.

    This disease has no guarantees regardless of age or the use of the Disease Modifying Drugs (DMDs). MS is a progressive disease, some people have very little progression, some have alot and there is everything in between.

    The DMDs may slow progress but some still progress and some do fine with and without the DMDs.

    I was diagnosed at the age of 24, symptoms since childhood, almost 52 years old and have never used any of the DMDs. I have had very little progression after all of these years.
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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      #3
      Hi Patrick and welcome!!

      Please try not to stress out too much progression or what "stage" means or the doctor's remarks. Snoopy made some good points here and I just want to add that stressing about it will do your body no good.

      I had MS symptoms for 10 years before they gave me a proper diagnose. Would I be better off today if they caught it earlier? Maybe. Maybe not.

      I think it's important for all of us to find our comfort zones - be it thru exercise, eating habits, a med (and neuro) that seems compatible with you! A positive attitude, staying calm and surrounding yourself with good people (like here ) and arming yourself with knowledge (you can get that here too ) will carry you far on this journey.

      Please feel comfortable coming back to ask any question. We understand and we care!
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        It makes me wonder when your neurologist went to medical school because the things he told you are pretty outdated. MS doesn't have "stages" with numbers. If you do some MS homework you won't see it described like that anywhere.

        When it comes to MS your not a rare case and there's no way to know how you would have progressed with or without medication. There's no way to predict it even now. Even with Tysabri and Campath and all of the modern medicines being used for MS, some people on them are STILL progressing. So it isn't realistic for you to think for one minute that you absolutely wouldn't have progressed if you had started medication earlier. If your doctor told you that then he's either mistaken or not being honest with you.

        As far as what your doctor means by "stage 2" if he means secondary progressive, I think if you do your homework about MS you'll find that going secondary progressive within only 5 or 6 years WOULD be rare so I'm not sure I believe that part either. And the figures I've read say that the risk of PML on Tysabri is 1 in 1,000 not 1 in 10,000 so it looks like the risk is 10 times worse than you think it is.

        I hope you do some MS homework and come back here and ask questions because some of what you think your doctor told you doesn't sound quite right.

        Comment


          #5
          Hi Patrick,

          Welcome to MS World! Glad to have you here, but not the reason why.

          Sounds like you do need another medical opinion and I do hope you get one soon. This place is a great site to learn about MS and get support.

          Hope to see you around the boards!

          Comment


            #6
            Hello and Welcome Patrick!
            When I can laugh at my experiences, I own them and they don't own me!

            Comment


              #7
              Ouch!

              Originally posted by SNOOPY View Post
              I was diagnosed at the age of 24, symptoms since childhood, almost 52 years old and have never used any of the DMDs. I have had very little progression after all of these years.
              So since you have had the disease for almost 30 years and have used no treatments (DMDs) and on top of that very little progression, this gives you the right to just cut up on my limited knowledge? get a life, I thought I would come here and be among others with the disease and KNOW what I'm going through and not asumming what I'm going through just because they've had this for a long time. I may not be giving the Neuro credit, not using his exact words but am doing my best to remember. 1 of my leasions in my brain is messing with my memory and preventing me from quoting my neurologist. this is really hard to cope with this. only 3 large enough to do any real damage to my brain but when I saw my MRI rewsults I counted 15... 12 smaller ones that I hope won't grow into something terrible. Congratulations on never experiencing the worst of the disease and I hope that you never will, but please, let's hear from those that understand what I'm going through and not just assuming.

              Comment


                #8
                Originally posted by MS_ cant_beat_me View Post
                So since you have had the disease for almost 30 years and have used no treatments (DMDs) and on top of that very little progression, this gives you the right to just cut up on my limited knowledge?
                I'm not sure where your anger is coming from. I was simpy trying to give you correct information about MS. My answer was based on what you wrote, that your neuro told you.

                Congratulations on never experiencing the worst of the disease and I hope that you never will, but please, let's hear from those that understand what I'm going through and not just assuming.
                You are "assuming" something you know nothing about. I really am not into "who has is worse." All I will say is I have had 5 exacerbations and 3 of them were quite severe.

                I have seen and experienced a very ugly side of this disease, which had the ability to scare the crap out of me and left me with residual symptoms.

                Never assume you know someones story or what a person has gone through in regards to this disease, you could be quite mistaken.

                Although you have choosen to verabally attack me...Welcome to MSWorld.
                Diagnosed 1984
                “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                Comment


                  #9
                  To all who are reading this - please, please try not to lead this into an argument~ As we all know, when this happens, no one wins. We are all here as patients helping patients and thanks to all for respecting others!
                  1st sx '89 Dx '99 w/RRMS - SP since 2010
                  Administrator Message Boards/Moderator

                  Comment


                    #10
                    I came here to get knowledge on the subject and so far have been successful at being told that I am ignorant on the subject and that I need to get knowledge on the subject. Well so far I have been successful and even learned a little about the MS treatment center that I go to. Rated one of the top 10 in the USA? Allegheny General Hospital? Pittsburgh, PA? My Doctor is one of the founding creators of Tysabri (Natalizum)? oh that's cool. I hope he knows what he's talking about.... To all of the others that gave me welcome, thank you for that.

                    Comment


                      #11
                      verbally attacking you?!?!

                      I'm only responding to what you quite clearly TYPED in response to my original posting. I'm done on this board

                      Comment


                        #12
                        Originally posted by MS_ cant_beat_me View Post
                        My Doctor is one of the founding creators of Tysabri (Natalizum)?
                        So, your Neurologist is Ted Yednock?
                        http://www.forbes.com/2009/10/27/ms-...e-tysabri.html
                        Diagnosed 1984
                        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                        Comment


                          #13
                          “Thank you all for your assistance to MS_ cant_beat_me. This thread will now be closed.”
                          1st sx '89 Dx '99 w/RRMS - SP since 2010
                          Administrator Message Boards/Moderator

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