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Dr says older pts don't need treatment?

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    #16
    Haven't Been Diagonised But it sure feels like MS

    Your experience of not receiving treatment because you are an older patient is not encouraging... I have be experiencing MS-like symptoms for about 5-7 years and just turned 60 in October.

    I have spasacity, vision issues, extreme fatigue and urinary incontinence (enough to take out stock in POISE pads :-) )
    Most days I require a can to walk if the distance is longer than 2-3 blocks and that walk seriously tires me out. All of these symptoms occur in cycles....so I don't know what it is and don't have insurance/can't afford to get a diagnosis.
    'What is a person to do?

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      #17
      I am 56 and have greater sx in the last 5 years than the entire 30 plus years I have had sx. I am doing better on TY now than I was prior to it. I'm not stopping.
      Plan for the future, but not too hard; it’s not your decision anyway

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        #18
        Had a support group meeting tonight, Dr was asked specifically about this topic, He was the head of MS clinic and research at Duke University Hospital and has been involved with an extensive amount of research along with a huge amount of MS patients.

        He stated that SOME people in the mid 60's may be able to stop treatments, his experience is the same as with most dmd, it works for some and others have hit bottom shortly after stopping. He said he would look at mri history and the history of each patient and make suggestions from that point but it is NOT for everyone by any means.
        Plan for the future, but not too hard; it’s not your decision anyway

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          #19
          My neuro has never suggested that I come off my Rebif and I am 63. I think it has helped me stay relapse free. But of course, you never really really know.

          I guess I could stop taking it and be fine or I could stop taking it and it be terrible. Hind sight is always perfect.

          Who really really knows?

          Do I want to take a chance? no

          lydialou

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            #20
            If you're still having relapses, a lot of neuros think you can benefit from being on one of the DMDs no matter what your age is. Even if you have a progressive form of MS, many neuros encourage you to try one of the DMDs.

            I have SPMS and have had first one neuro, then another tell me it would be good for me to be on one of the DMDs. I was on Avonex 3 years and Copaxone 3 years. Both times some of the side effects got to be too hard for me to deal with.

            I think they want to offer you whatever they possibly can even though there is almost no evidence that the DMDs help MS in the progressive form, as RachaelsRainbows pointed out.

            As for the age issue, they haven't studied how the DMDs affect older people and so some neuros would like to spare you the possible side effects, plus the nuisance and expense, of being on an injectable drug.

            It's not so much that you don't "need" it. It's more that the negatives might outweigh the positives.

            NFK, I'm surprised your neuro said that, though. My impression most neuros will present the patient with a choice of DMDs but stay noncommittal about how advisable it is to be on one of them. As the first neuro put it to me, "I think everyone with MS should be on one of these."
            MEMBER OF MS WORLD SINCE 4/03.

            SPMS diagnosed 1980. Avonex 2002-2005. Copaxone 6/4/07-5/15/10.

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              #21
              That sounds like government health care to me! I will fight this disease with everything I have and would rather take injections than to do nothing at all!!!!

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                #22
                I have SPMS, & after a sever injection site reaction that took almost 3mo.to heal I was taken off all DMD. My wound care Dr. consulted w/ my 2 neuro's & it was decided not to put me back on any. As I'm 68yrs old & have not had an exacerbation in almost 5yrs,everyone is happy.
                God Bless OwlNona!

                Comment


                  #23
                  Originally posted by Lexie View Post
                  That sounds like government health care to me! I will fight this disease with everything I have and would rather take injections than to do nothing at all!!!!
                  When I read statements like made in this thread I think of:
                  http://www.nytimes.com/1984/03/29/us/gov-lamm-asserts-elderly-if-very-ill-have-duty-to-die.html
                  GOV. LAMM ASSERTS ELDERLY, IF VERY ILL, HAVE 'DUTY TO DIE'
                  AP
                  Published: March 29, 1984

                  Editors' Note Appended

                  DENVER, March 28— Elderly people who are terminally ill have a ''duty to die and get out of the way'' instead of trying to prolong their lives by artificial means, Gov. Richard D. Lamm of Colorado said Tuesday.

                  People who die without having life artificially extended are similar to ''leaves falling off a tree and forming humus for the other plants to grow up,'' the Governor told a meeting of the Colorado Health Lawyers Association at St. Joseph's Hospital.

                  ''You've got a duty to die and get out of the way,'' said the 48-year-old Governor. ''Let the other society, our kids, build a reasonable life.''

                  Some groups of the elderly immediately denounced Mr. Lamm for the statements. Reactions From Elderly

                  Dorothy Minkel, 75 years old, who has lobbied the Legislature for more than a decade on issues of the elderly, said, ''It is an insult for anyone to suggest we have a duty to die.''.

                  Another lobbyist who represents elderly groups, Robert Robinson, 68 years old, said, ''To say they have a duty to die and get out of the way brings me back 40 years ago when a person in Germany not only advocated that but carried it through.''

                  At a Senior Day gathering today, one elderly woman told Mr. Lamm, ''I hate you for what you have said.'' But others at the meeting in the First Baptist Church applauded the Governor after hearing his explanation. At the meeting with representatives of senior citizens groups, part of planned Senior Day activities at the Colorado capital, the Governor said, ''We are really approaching a time of almost technological immortatily when the machine and the tubes and the drugs and the heart pacemakers . . . literally force life on us.

                  ''I believe we really should be very careful in terms of our technological miracles that we don't impose life on people who, in fact, are suffering beyoind the ability for us to help.'' In Support of Options

                  A member of the audience, Ferne Taylor of Denver, drew applause when she said, ''When I can't digest my food, when I can't breathe on my own, when my heart can't beat on its own, it could just be that God is trying to tell me something.''

                  Mr. Lamm, when asked, said he did not have any particular age in mind for the terminally ill to ''get out of the way'' and that the decision should be made by the ill person in consultation with doctors and family members.

                  The Governor said Tuesday that the costs of treatment that allows some terminally ill people to live longer was ruining the nation's economic health.

                  Steve Mehlman, a spokesman for the American Association of Retired Persons in Washington, D.C., said cutting off treatment to the terminally ill was no way to stem the rising cost of hospital care. ''It is not the elderly's fault,'' Mr. Mehlman said, ''We're the victims of health care inflation, not the cause.''

                  The Governor's comment was the latest in a series of controversial remarks by Mr. Lamm, who is in his third term as Governor. He recently angered Nevada officials by saying that one in eight women under the age of 45 in Las Vegas was a prostitute.
                  Editors' Note: November 23, 1993, Tuesday An article on Oct. 1, reporting on Senate testimony by Hillary Rodham Clinton about health care, included a passage about former Gov. Richard D. Lamm of Colorado. It said Mr. Lamm "drew widespread antagonism when he said in 1984 that the elderly, if ill, 'have got a duty to die and get out of the way.' " Similar characterizations of Mr. Lamm's speech of March 27, 1984, were published soon after it was given, and have appeared periodically. But that version of Mr. Lamm's remarks is a distortion, as Governor Lamm complained in 1984. He said then that insufficient attention to detail by the news media had led to a misinterpretation. An editorial in The Times on March 31, 1984, and articles on April 1, April 4, June 30 and Sept. 5 of that year reported on criticism generated by his speech or included accounts of his statements, but noted that his remarks had been misconstrued. Nevertheless incorrect accounts appeared in The Times on March 29, 1984; April 1, 1984; April 18, 1984; May 11, 1984; Jan. 5, 1985; Jan. 18, 1985; Aug. 18, 1985, and Aug. 20, 1985. In a letter dated Oct. 8, 1993, Mr. Lamm provided excerpts from the 1984 speech, in which he spoke philosophically about the terminally ill of any age, about the extraordinary costs of high-technology medicine and about the ability of medical science to stave off death far beyond considerations of quality of life. After saying that society should be talking about the ethical implications, Mr. Lamm said, according to the excerpts: "We've got a duty to die and get out of the way with all of our machines and artificial hearts and everything else like that and let the other society, our kids, build a reasonable life." In his letter last month, Mr. Lamm wrote that he never said "the elderly or the terminally ill have a duty to die," and he added, "I was essentially raising a general statement about the human condition, not beating up on the elderly."
                  It always comes down to $ for many. And our Gov't's budget or more wisely, the State we live in.

                  Gov. Lamm is now a senior...I wonder if he'll revisit this famous statement! fed

                  Comment


                    #24
                    My 2cents

                    Well, I'm 69 and on DMD .. Copaxone. My neuro never mentions going off it. I think you should ask your doc for the article he cites that suggests you should not be on a DMD.

                    I go by what my MRI shows. If you have lesions which have remained stable or have gone away, then perhaps you could try not being on a DMD for 6 mos or a year. Then have a repeat MRI to see what your brain looks like.

                    I was dx'd at age 50, but chose not to use a DMD. I finally decided to use one 4 yrs ago and my neuro orders an MRI with contrast every year.

                    Frankly I don't feel any better, butI do not ever really recognize any relapses. I never have, so how can I actually say I'm doing better? Or worse?

                    I also received a letter from Medicare part D saying that my DMD doesn't meet their formulary (it's a Tier 4) drug this year, last year was a Tier 3, but still not covered.

                    I have to call my doctor to 'be sure' he can't find me a generic that is acceptable. That would be funny, but it's not humorous that Medicare doesn't even know that DMD's don't have generics.

                    So tomorrow I'll start with Shared Solutions and then contact the neuro to request he ask for an exception.

                    As a senior I am beginning to sense a certain kind of prejudice against age and illness. I wish I felt well enough to be a vocal critic of those who are so misinformed or who think they wouldn't rather get old instead of the alternative!

                    Diane
                    You cannot dream yourself into a character; you must hammer and forge yourself one.

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                      #25
                      Yeah I have heard that

                      Several years ago - back before I even had a definite dx, the nuero I was seeing back then told me that it didn't matter if I had a dx or not as no one was treating Seniors with MS anymore. Our health wasn't expected to get better anyway.

                      I have heard those words in conjunction with other issues and based on the fact that I might have MS so therefore nothing would be done to correct any other issue especially those requiring surgery. Some of those over time I have come to agree with. Case in point, I have two herniated disks and two ripped disks. The surgeon I was sent to told me he would not touch it nor would any other since I might have MS and had no chance at a quality life. Since then I have learned that since I have degenerated disk disease, what ever repair word they might do - that disease would eventually undo.

                      So while there may be some stuck in the mud nuero that feels we are not worth the money - (notice they don't hesitate taking money from us) there are far more that believe there is no reason we could not at least enjoy our life as much anyone else.

                      Here's to hoping that by now you have found yourself a great dr.

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                        #26
                        My first serious relapse came at the age of 57 though I had other "signs" before that. I didn't have another relapse for 6 years. I was 63. I still wasn't DX because I was visiting Italy for an extended period. Then, because I never recovered (every day I was dizzy, had bad balance and double vision) I went to the doctor again and everything pointed to MS. I had active lesions in my brain and one on my spinal cord. My neuro said it really looked like MS "except for my age". I finally got DX. I was 65 years old at the time so I don't think (at least in my case) that after a certain age you don't have to take meds. I take Aubagio religiously and haven't had another relapse since starting it 22 months ago.

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                          #27
                          loopey, it's nice to hear about someone who's pleased with one of the MS treatments. Congratulations on finding one that seems to be working for you. I hope you'll continue to be free of relapses.
                          MEMBER OF MS WORLD SINCE 4/03.

                          SPMS diagnosed 1980. Avonex 2002-2005. Copaxone 6/4/07-5/15/10.

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