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Still there is NOTHING new ! What a surprise!

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    Still there is NOTHING new ! What a surprise!

    I can't speak for anyone, other than myself ! I feel like I have been deceived by the medical people that I have consulted ! And I am furious about it !
    I have been reading and studying MS since it reared its ugly head in my life in 2009. I am constantly losing functionality ! I have seen and spoken to many of my area's prominent neurologists about treatments. I have seen and heard a lot of 'promises' but there hasn't been anything that will 'cure' this ugly disease! It is really difficult to live with a disease that has no cure and has never had one. How does anyone live with this disease and stay sane ? Sometimes, I just want to scream! A rant, I know!

    #2
    Hey Jerry,

    Did you read Marc's recent post (7/6) over at wheelchairkamikaze?

    He went to the NIH recently for another evaluation....I think you'll be able to empathize with him Don't forget to listen to the Ethel Merman video he's posted at the end of his blog entry

    **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to your Username on black bar running across top of page > My Settings > Edit Profile**
    Last edited by kelm10; 07-10-2015, 05:49 PM. Reason: Remove url

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      #3
      Something happen? Did you have an appointment?
      Kathy
      DX 01/06, currently on Tysabri

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        #4
        Yes, I did read Marc's article. And yes, I have an appointment with the rest of my life, and I'd like to be on-time and present ! Not just in body but also fully functional! If I was given a toy that was as broken as I am right now, I would have thrown it out a long time ago.

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          #5
          I have a different expectation, which is none, because thankfully none of my health care providers have ever given me even a glimmer of hope that they will find a cure for MS in my lifetime.

          I read Curring MS by Howard Wiener soon after I was diagnosed back in 2004 its a great book with a misleading title because the take away for me was they have tried so many different things and nothing has even really shed light on what exactly we are dealing with. That dear man spent his career trying to find some answers and there still aren't any which in a way took the burden off me even bothering to hope for a cure.

          What I do hope and think we are seeing in a very small way now is more choices of medications to possibly help keep this miserable disease at bay for a while longer, maybe. I hate MS.
          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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            #6
            Thankfully, no doc ever set my expectations too high either. Sorry Jerry, that is just not fair if they did. My old neuro, while thrilled with some of the research, was also worried at what some of the repercussions could be with some of the genetic and stem cell research. He told me at last appointment, when he retired. He
            was holding out hope but letting me know a lot to be discovered.

            Until they know a cause(s), I am very doubtful a cure can be found. Once I know they have a cause, I will hold out hope for a cure. Until then, I am fortunate to have options. I am sure if I did not, I would be as frustrated as you are Jerry. I am frustrated for you and do pray they at least find something in our lifetime for progressive MS that reverses damage. My prayers go out to you and your family, hoping your life interrupted gets to resume in full. If only the toy doctor could patch us all up....
            Kathy
            DX 01/06, currently on Tysabri

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              #7
              Scream all you want jerry!!! We are listening and with you all the way.

              I just get "nothing else to be done to stop the progression" Heres a bunch more prescriptions to handle your symptoms.

              So awful.

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                #8
                Simple calming solution

                I was diagnosed with MS 21 years ago. I have used a power wheelchair for the last 10 years. My philosophy regarding cures and medications is very simple. I have quit paying any attention to research studies, meds, etc. until my neurologist can write me a prescription that will do me some good.

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                  #9
                  I'm awfully curious what kind of "promises" you were ever told?
                  I know I was told I have MS, but when I refused a DMD (the only one that was a fit for me at the time was Copaxone) THEN it was written as "Probable MS" in my record.
                  I can't imagine having an expectation for a "cure" based on the word of my Physician and then find out they are full of crap.

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                    #10
                    Originally posted by JerryD View Post
                    I have seen and heard a lot of 'promises' but there hasn't been anything that will 'cure' this ugly disease!
                    No, there is no cure and never has been. I have never read or heard any "promises" about a cure.

                    It is really difficult to live with a disease that has no cure and has never had one.
                    Yes it is.

                    How does anyone live with this disease and stay sane ?
                    Not much else you can do but learn to live with a disease that has no cure

                    I prefer to focus on the positives in my life and not the negatives...but that's just me
                    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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                      #11
                      Originally posted by WillyNilly View Post
                      I'm awfully curious what kind of "promises" you were ever told?
                      I know I was told I have MS, but when I refused a DMD (the only one that was a fit for me at the time was Copaxone) THEN it was written as "Probable MS" in my record.
                      I can't imagine having an expectation for a "cure" based on the word of my Physician and then find out they are full of crap.
                      Physician's records are altered to justify their treatment and protect their liability. I look at my records and none of them correspond with my health condition. When I got my report for my first MRI it said, "patient has a history of demyelenation disease." How could I have a history? I had no diagnosis!

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                        #12
                        I will, honestly, state that I was never given any promises that I would have a 'cure' for my MS. But, to answer these questions, I was told by many Neurologists and MS nurse practitioners that 'they're coming up with 'new' treatments and they are coming onto the market quickly' ! 'The 'cure' for MS is 'right around the corner'! My first neurologist told me,' don't despair' there will be something for you in the near future'. That leads me to believe that the neurologists are trying to keep my 'spirits' up and my 'hope' alive. Well, that's nice for them but it's hell for me. I hate to be turned into a 'doubting Thomas' but my experience with MS has been all disappointment, no bright spots ! Good luck, all

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                          #13
                          Jerry, I'm there with you! Of course they need to stay positive and hopeful for our sakes as well as their own since their entire career is wrapped up in this disease. But when you get to a certain point and there's nothing else they can do with current therapies and research, it is a devastating feeling.

                          I've gone to my neuro for 15 years so fortunately he's used to my sarcasm and as we were discussing the lack of tolerable, viable options at my last visit, I said: Boy, y'all have known about this for more than 100 years and this is the best you can come up with? I realize we are not the only disease in this circumstance but it's still frustrating as anything.

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                            #14
                            Ahh yes Jerry! The old, "right around the corner" speech.
                            I understand what you're saying now.
                            I had a ton of questions about the Copaxone when it was offered (after being sent home with an info pack and studying up on it) and my Neuro didn't have much of an answer when questioned about how I felt anyway combined with a medication that is prone to make people feel worse on a daily basis because it MAYBE would slow an already slow progression. Why would I do that to myself when they refuse additional "feel goods" for the symptoms with or without the DMD?
                            That probably didn't make much sense but I knew what I was trying to say when I said it
                            Geez- I just want to feel good, or at least better than I do, but heaven forbid anything that is really a "feel good" is addictive these days. I want to scream, "Until you can fix it what difference does it make!"?

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                              #15
                              My hopes were never high. The neuro who diagnosed me all those (18-ish) years ago was confident (apparently) there would be a dead-set cure within ten years.

                              But I'd read those really old medical books when my feet went numb and I had a rough idea what was wrong, where they recommended people with MS do knitting, and it was all basically hopeless.

                              It's not hopeless, but if you'd seen me gamely wheelie-walker-ing my way into the Post Office today, you would kinda wonda.

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