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    #1

    What's the deal?

    So, I've been thinking and wondering about this for some time. How is it that there have been less than 100-200 cases of Ebola and World Health Organization mobilizes a gargantuan effort. And finds an effective treatment.
    MS effects 2 to 3 million people worldwide (about 500,000 people in the US alone) and there has been nothing but treatments to 'slow' the progression of the disease. It's maddening.
    It's enough to drive you crazy. I have been trying to get some answers from every medical practitioner I see. And I have seen a bunch. My MS neurologist always says that there are 'promising' treatments on the horizen. My PT says that she is 'baffled ' by the lack of progress in finding a ' cure'. I guess the answers I have heard don't satisfy my curiosity.
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    #2
    Don't worry so much about a cure.

    You seem to really be concentrating all your energy on why there isn't a cure for MS. Why is there no cure for cancer? And, where is the cure for Ebola, HIV, Autism, etc.? You keep aslking yourself the same question over and over. There's not a cure right now. Maybe there will be a cure in our lifetime. Maybe there won't. Take some time out from worrying about a cure. Enjoy the life you have as best you can and learn to accept that, right now, there isn't a cure.

    Comment

      #3
      Thanks for your response, kittysmith. I admire you that you can live with this disease and you have come to accept it, That you can do that is admirable.
      I cannot accept MS. I don't know if I will ever. I hate this disease. It is an uninvited guest in my life story. I will not accept this MonSter. I will fight it with every ounce of strength that I can muster. If that means that I throw stones and call it names, that's what I'm gonna do.
      Everyone learns to cope with loss differently. I wish that I could cope more quietly. I wish a lot of things. How does it feel to wish?

      Comment

        #4
        You go Jerry! Handle it the way is right for you. These things are baffling. My sister died of diabetes in 1983. At the time we thought a cure for diabetes was just around the corner but there are more cases than ever now.

        Is it the effort that is put into it? Or is it just the nature if these diseases? Some can be isolated and treated and others keep mystifying scientists.

        Comment

          #5
          I think it's safe to say that everyone that has MS wishes for a cure but in reality there isn't one. If we focus on the why and when all the time we don't focus on the present and reality. The reality is we have MS and the present is there's no cure. We have to focus on trying to live everyday to the fullest with this dreadful disease. I'm sure we all get angry about it at times but that does no good. Accept the fact you have MS and adjust your life to live with it.

          In your post you didn't say if you are disabled in any way or how MS affects your daily life. I walk with two canes, I suffer with fatigue everyday and that's not to mention the numbness, tingling and the horrible pain. I try not to focus on my MS, though everytime I get up to go somewhere I am reminded of it when I pick up my canes.

          Forget about the cure. There isn't one, though maybe one day there will be. Focus on how to make your life easier living with the MonSter and I think you'll find life becomes a bit easier. I know, I know, easier said than done.

          When I was DX with cancer 20 years ago I was given the best advice one could ever ask for. It was given to me by my Mother, who was battling breast cancer. She told me, Blue, (that was her nickname for me) don't think about all the time, don't let it consume you or it will drive you crazy. I apply that to my MS.

          It does help!! Good Luck to you!!
          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

          Comment

            #6
            Jerry,

            Two things:
            1. Since Ebola is contagious and fatal, it is scary. Of course expedited resources needed. But if you noticed, not until it started to affect the western world was it feared, similar to HIV in its early years.
            2. Until they know a cause, a cure can't be found.

            Just my thoughts.
            Kathy
            DX 01/06, currently on Tysabri

            Comment

              #7
              JerryD, my reaction to MS is very similar to your's. It's been 15yrs and I still haven't found a way to cope with all the losses in my life due to MS.

              I've given up on the prospect of reasonably priced, and more effective DMDs in time to benefit me. I've exhausted my resources and time isn't standing still for me for either of those to happen. If a miracle MS treatment is discovered, it will probably not be available to me due to the risk involved. My guess is the newer treatments will be for the healthier and younger MS'er. I hope I'm wrong.

              Comment

                #8
                According to the CDC the death total from Ebola is 8444. Which is significant especially because in large part people with MS swear MS isn't fatal.

                http://www.cdc.gov/vhf/ebola/outbrea...se-counts.html

                The bottom line is that the neurology in particular is extremely complicated and as KittySmith pointed out there are many diseases/conditions with minimal progress in treating and no cure in sight. It just isn't easy to successfully treat these miserable diseases.
                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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                  #9
                  MSW1963, good to have you on board my ship. I feel that MS is 'robbing' me because, prior to MS, I travelled extensively. I did things with my wife and daughter like going to DisneyWorld. Having this disease doesn't let me enjoy these things. Everything is so much more difficult to do and enjoy, now, that I've given up trying to adjust to MS. I have only one wish and that is 'go away MS'. Don't drop me a card Just go away. Far away

                  Comment

                    #10
                    Originally posted by pennstater View Post
                    Jerry,

                    Two things:
                    1. Since Ebola is contagious and fatal, it is scary. Of course expedited resources needed. But if you noticed, not until it started to affect the western world was it feared, similar to HIV in its early years.
                    .
                    I was going to say this. A communicable disease that kills 60%(or whatever) of people who get it within two weeks demands immediate action in a way that MS doesn't.

                    That said, I wish they'd hurry up with a cure for us already. Fix my immune system, damnit, and remyelenate me!!!
                    Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

                    Comment

                      #11
                      Hi Jerry,

                      You'll notice the bulk of the cures are for diseases that are viral or bacterial in origin. Cancer and MS have aberrant cells of the body's own type, so anything fatal to them is also highly cytotoxic to the host. Of course we can also used dead or disabled viruses to provoke an immune response and impart immunity, but we have sort of the opposite problem.

                      Comment

                        #12
                        I don't so much hate MS for what it has taken from me...I have had a good life and am proud of what I have done. I did make a difference and have fulfilled my mission in life. So no regrets, and whatever else of a quality value is a bonus.

                        But at this point, I have said it before...I am just tired. I hate MS. I hate how it makes me feel. Every flare I get closer to throwing in the towel.

                        I stated in a previous post about all the different diseases out there that there is no cure for...it isnt limited to MS or Ebola. But honestly, a couple of weeks suffering from Ebola can sound pretty good to someone continually suffering from MS or is in a major flare.

                        MS is not limited to confinement to a wheelchair or scooter or using walking aids or not being able to drive. MS can make you blind, make you so dizzy that you spend the day projectile vomiting for weeks or months on end, it can affect your heart where surgical intervention is needed or lungs to where you have to be put on a respirator. You can lose function of your hands, exeptionally impaired swallowing, take away you ability to talk, it can pretty much cause anything imaginable.

                        And yes...it too can cause death. I have had two friends die from MS...both at the age of 50. There was a recent death in the MS Community of an 18 year old who had MS and Seizures.

                        Jerry-There is no cure. Period. But it is something we all have to live with. One can be hopeful if they want...I dont see hope...that train left a long time ago because I have had this too long and damage is done. I don't give two flying figs about what is in the pipeline or how far we have come. And I don't spend my days Googling and researching new treatments.

                        But younger and newer people have a lot to be hopeful for, and I hope they don't lose that fire.

                        At 51 and after many ups and downs I have accepted my fate. I have to live with my flavor of MS, just like everyone else has to live with theirs. Seize the day...it might be your last.

                        I am flaring...but today...I am going to see Mockingjay with a friend. I am going to suck as much out of life as I can until one day I indeed quietly say, "Enough...its time to put this body to rest."

                        I understand where you are coming from Jerry...I truly do. But IMHO, you might want to consider seeing a Therapist to work through this. I have one myself...no shame here. For everyday that you spend worrying about a cure...its a day you miss out on living.
                        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
                          I was thinking the same thing. Think of all the money that has gone into curing cancer? Yet nothing has happened.

                          Comment

                            #14
                            Katie, so well said. Your thoughts and words are exceptional. I started to see a therapist, this week. My 2nd session is on Tuesday.
                            If you haven't picked up on it, I am really angry. One of my 'nick'names when I was working was 'the angry sound man'. So, who knows, I may have had symptoms of MS many years before diagnosis in 2009.
                            Thanks to all of you for your comments. It inspires me to hear others' thoughts. This is a community of people who have this miserable affliction and share their thoughts, experiences and feelings. Even though I am 'angry' and miserable, I appreciate your participation.
                            "MISERY LOVES COMPANY"
                            Maybe I should use that attached to my name: JerryD, BA, soundman, MLC Good luck all

                            Comment

                              #15
                              Existing with MS, not Living

                              Originally posted by JerryD View Post
                              Thanks for your response, kittysmith. I admire you that you can live with this disease and you have come to accept it, That you can do that is admirable.
                              I cannot accept MS. I don't know if I will ever. I hate this disease. It is an uninvited guest in my life story. I will not accept this MonSter. I will fight it with every ounce of strength that I can muster. If that means that I throw stones and call it names, that's what I'm gonna do.
                              Everyone learns to cope with loss differently. I wish that I could cope more quietly. I wish a lot of things. How does it feel to wish?
                              Am I happy I have MS? No. But I have no choice other than suicide. I'm trying not to take that route right now, but every day is a struggle. I hate myself. Life sucks.

                              No one is telling you to cope quietly. That's what this forum is for. I encourage you to continue to share your feelings. I was just trying to help you let go of some of the anger you are expressing.

                              I appologize if I offended you. Just trying to help. Good luck with your struggle. Vent away. That's what we are all here for.

                              Comment

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