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    New to PPMS and this site

    I'm 54 diagnosed 6mths ago after a battery of tests with PPMS.
    WHAT NOW. It was hard to swallow the diagnosis, now comes the what's going to happen next, how bad will I get, do I do Ocervus and take a chance this will slow it and not give me breast cancer or a respiratory infection that might go to pneumonia. I'm doing PT and learning how to use a cane (just in case). Most days I feel fine. Sure always sore legs and an achy back. But then again who doesn't. I have felt this way for years, off balance, lazy days, achy muscles,migraines. So now there's a name to it, now what.
    My girlfriend, kids, and myself have done a LOT of web reading. Now I want to know what real people have to say.

    #2
    I was diagnosed with PPMS in 2003 at the age of 53. I chose to take my chances with the riskier DMD’s. I was on Tysabri for 4 years until I tested JCV positive and I’m now on Ocrevus. I know there are risks of infection and cancer. I just want to do everything possible to slow the inevitable progression.

    There has been a slow steady progression for me. I can’t tell whether any of the DMD’s slowed it down because there’s no way to know what it would have been like without the drugs. I’m 68 and have been in a wheelchair for 3 years.

    There is no way to predict the course of the disease for you. It’s different for everybody.

    Best wishes on your decision and your PPMS journey. Let us know how you’re doing.

    Comment


      #3
      Sorry that you are facing this but hopefully you are relieved to have a diagnosis that lets you make some medical decisions. Oh, happy Valentines day. I suppose that you feel that you got an arrow to the heart with the dx.

      It takes a good long while to digest the dx so give yourself permission to have different sorts of days in how you adjust. Please do look at lifestyle interventions- overcomingmultiplesclerosis with Dr. Jelinek has great suggestions. If you look at the NationalMS Society webpage they have a clinical trials link and many of the lifestyle studies are things you could do without being in a trial- ex. vitamin D, exercise, alpha lipoic acid, nutritional changes.

      For me the hard part is the invisible part of MS and folks not getting the struggles. Even beyond the MS struggles, they don´t seem to get the psychological part that is required to deal with the diagnosis, its uncertainties and it´s possibilities for the future. Oh, and then there´s the financial piece and health insurance. I´m still working on not reacting to "You look so good." and "I´m so tired." I respond in my head, take a deep breath and let go.

      If you don´t feel like your neurologist is approachable or really hearing you, find another one.

      Comment


        #4
        Hi DonnaH and welcome to MSWorld.

        Originally posted by DonnaH View Post
        I'm 54 diagnosed 6mths ago after a battery of tests with PPMS.
        WHAT NOW.
        Now is the time to try and control the things that you can, by taking good care of yourself physically, mentally, and spiritually.

        Choose healthy foods for your body, and make an exercise plan with your physical therapist. Stretching is especially helpful.

        Let your doctor know if you have depression that lingers, or anxiety that interferes with your daily living. Mental health is as important as physical wellness.

        Take a little time in your busy day, every day, to learn and practice ways to find peace and calm for your spirit.

        Live one day at a time in today, not in the past or future.

        As you can see, there are many things that you can do now.

        Originally posted by DonnaH View Post
        It was hard to swallow the diagnosis, now comes the what's going to happen next, how bad will I get, do I do Ocervus and take a chance this will slow it and not give me breast cancer or a respiratory infection that might go to pneumonia.
        MS is unpredictable. There's no way to know how you will be affected.

        You may be a good responder to Ocrevus, but you won't know unless you try it. Keep in mind that you can always make the choice to stop taking it if you need to, or want to.

        Keep asking questions, and we'll be glad to help if we can.

        Take Care
        PPMS for 22 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Welcome DonnaH,

          Was going to highlight parts of the responses from the other PPMS responders but soon realized that I agree with everything said!

          So, since you didn't mention it, may I ask if the dx you received wasn't preceded by a dx of RRMS or SPMS?

          I ask because I found that a neuro often doesn't know the type of MS and tend to want their patients on a DMT immediately. My neurologist dx'd me as RRMS in spring 2008. 8 years later without any signs of remission he said PPMS. The DMT didn't do anything that I know of as far as slowing down the progression. But as kmallory1 said there’s no way to know what it would have been like without the drugs.

          My progression is very slow at 11 years in, 21 since I suspected a problem. I still have good comprehension, walk, drive and my left side is near perfect... not so for right arm and leg. Will be 69 next month, so I can not whine 'bout it.

          My $ .02... echos what has been said with strong emphasis on KoKo's opening line.

          Oh, and on behalf of a lot of "real people" here, Welcome!

          Jer

          Comment


            #6
            [QUOTE=502E79;1517597]Welcome DonnaH,

            Was going to highlight parts of the responses from the other PPMS responders but soon realized that I agree with everything said!

            So, since you didn't mention it, may I ask if the dx you received wasn't preceded by a dx of RRMS or SPMS?

            I ask because I found that a neuro often doesn't know the type of MS and tend to want their patients on a DMT immediately. My neurologist dx'd me as RRMS in spring 2008. 8 years later without any signs of remission he said PPMS. The DMT didn't do anything that I know of as far as slowing down the progression. But as kmallory1 said there’s no way to know what it would have been like without the drugs.

            My progression is very slow at 11 years in, 21 since I suspected a problem. I still have good comprehension, walk, drive and my left side is near perfect... not so for right arm and leg. Will be 69 next month, so I can not whine 'bout it.

            My $ .02... echos what has been said with strong emphasis on KoKo's opening line.

            Oh, and on behalf of a lot of "real people" here, Welcome!

            Thank you I was DX right off. I've been known as the klutz for years and just thought I was. Im not a complainer so I just kept on pumping along. My aches and pains I credited getting older.
            with my change in dr's he sent me for an MRI. That was 6 mths ago. Since then I've had a spinal tap, and another MRI w/contrast. Blood work like crazy. At 1st I was told I had MS. My Stanford nuro needed my spinal to confirm what he thought. Well confirmed, Primary Progressive
            He brought up Ocervus and our web search when on again.
            I have an amazing partner who's down for long road. My kids have even surprised me with concern and support. So I feel bad for the folks who don't have that.
            I'm the one who gets angry at myself for my awful mood swings, while my support doesn't hate me for it.
            I/we are preparing for the worst but I'm a fighter and won't go down without a fight....

            Comment


              #7
              Hi DonnaH and welcome to MSWorld

              At 1st I was told I had MS. My Stanford nuro needed my spinal to confirm what he thought. Well confirmed, Primary Progressive
              Multiple Sclerosis is Multiple Sclerosis regardless of what type a person may have. MS is a progressive disease. The progression is different for all of us. MS has always been known a chronic debilitating disease.

              The type is determined by the way it behaves. Unless you have been followed by a Neurologist for some years it will take time to know what course your disease follows which in turn will give a Neurologist the knowledge of what type you may have. Do you have Spinal cord lesions?

              I was diagnosed many, many, years ago. At the time of my diagnosis my MRIs where clear but I had a positive Lumbar Puncture (o-bands). My Neurologist said the disease was affecting the spinal cord and he was correct. Through the years my MS followed a relapsing/remitting course but after many years I have transitioned to Secondary Progressive.

              Information from the National MS Society about the different types of MS
              https://www.nationalmssociety.org/Wh...MS/Types-of-MS
              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


                #8
                Originally posted by DonnaH
                I'm the one who gets angry at myself for my awful mood swings, while my support doesn't hate me for it.

                Yeah, I hear you.... frustration can bring out the worst in each of us. Quick burst of anger at times over not being able to accomplish the simplest of things....! Arrrgh. And we move on. Such is life.

                You appear to have loving support to continue, and a good attitude! IMO, half the battle.

                I would re-read Snoopy's entry:

                Originally posted by snoopy
                The type is determined by the way it behaves. Unless you have been followed by a Neurologist for some years it will take time to know what course your disease follows which in turn will give a Neurologist the knowledge of what type you may have.
                She points out something that struck me immediately and probably others who responded to your thread.

                Jer

                Comment


                  #9
                  Hello!

                  Hello DonnaH - and welcome! I'm sure you'll find msworld a great help - I know I sure do!

                  I just got back from seeing my new neuro who says PPMS but we need the results from the MRI and/or a LP before an official diagnosis. I just thought I'd share my story real quick to give you more sides. As others have already said, everyone is different and please just take each day as it comes instead of living in a future that probably isn't true anyway.

                  I started having noticeable issues about 12 years ago. I'm terrible with timing, so that's a guess. My first issue was my right leg. I was very active, and would start out each day with a vigorous 4 mile walk. At the time, my youngest was about 9 years old and I was a single mom. I would bring a different child with me each morning and it was such a nice time for us But I noticed my right leg and foot was getting unusually tired right at the start of our walk. I shrugged it off and thought maybe I just needed new shoes. I kept switching shoes and nothing seemed to help, but still I shrugged it off.

                  That went on for a few years, and then my whole body just seemed to be breaking down. I was still very active and had a full daily schedule, but found myself not able to keep up, having to rest, take naps, etc. My balance was getting worse and I started falling every so often. Other things began to happen as well. Looking back now it's easy for me to see the problem: I was trying to live like nothing was wrong and that was causing all sorts of stress on the underlying issue and my body was freaking out and protesting.

                  I continued to get worse and eventually (finally) saw a doctor. He said several things, took several tests, and then suggested an MRI to check for things like MS. I had no clue what MS was, so I didn't even really hear him. I did not care much for that doctor, so I found another GP and he's been my GP ever since. At my first appointment, he agreed with the first doctor: MS. I also talked to a friend who was a doctor in another country. MS.

                  I finally saw a neurologist, but because my brain MRIs were clear, nothing much was done. A few other tests and such, but I felt like I was wasting my time. Since doctors made me anxious and my neuro was 3 hours away and I was not getting anywhere, I quit going for 2 or 3 years. I went back again, and then had another break, and so on.

                  Fast forward to our current time (for reference, I am 42 years old).

                  In the past 8 or so years I've progressed from being seemingly healthy and active, thin and in shape, to needing a cane, walker, wheelchair, or electric buggy (depending on the activity). My activities and responsibilities have been DRASTICALLY cut down by my loved ones and now all I have to do is sit around ... anything else I manage to get done is considered a bonus. Recently I have begun gaining weight, which is so hard for me to cope with. Not being active is finally taking a toll on that side of things. I do my best to eat healthy (I am very health-conscious when it comes to food!), so I think the only way to help myself with weight now is to be careful with portion size and snacking.

                  I have found ways to save energy. I really, really, really want to stay as active and productive as possible, so I just set a timer for 15 to 20 minutes, work on a task at a comfortable pace, and when the timer goes off I sit down and rest as long as I feel I need to. Sometimes I'm able to get back up and do another 15 minutes of 'work' after about a half hour of rest, but usually I need to rest for at least an hour before trying to do something else.

                  It may not sound like much, but in doing things this way I am actually able to get a lot done. In the past I would push myself and then crash for several days. That means getting a lot LESS done.

                  Reducing stress as much as possible is so very important. Also, I believe a regular bedtime routine and daily nap is crucial.

                  Other ways of adapting: I sit down as much as possible when doing tasks. Like dishes for example. I never thought I'd be sitting down to do dishes, but it sure spares my legs! I ask for help. I lower my standards and expectations of myself. I have grab bars and stools in various trouble areas of my home.

                  I try to stretch every day.

                  Because of my right side weakness and some confusion, I am not able to drive much. I usually feel safe and able to drive to church and back, but that's it [mostly country roads and about 10 minutes away]. I have a friend that takes me to all of my doctor appointments and does some of my shopping. My daughter helps me out with the rest of the shopping and such.

                  I've learned that life is not over!! While we may not be able to do all of the things we used to do, we can still find joy! I find joy in gardening, watching birds, and a few other things. My family does all of the hard work in the garden and I just try to go there each morning, set my stool down, and pick weeds for about 15 minutes each day. This is my happy place. Fresh air, birds singing, breeze blowing, sun shining. I get out there as early as possible to avoid the heat and the mosquitos.

                  Keeping a healthy attitude is so vital to your well being. And as others have also said, be careful about anxiety and such. I had not idea that anxiety would be a problem for me, but I find myself getting more anxious as the years go by. This is just not me (well, it is now!!! but it never was in the past). I can tell my loved ones "I'm done" and they all know what that means. This has been a huge help. Only those who are closest to me have seen me at my worst, so when someone outside of my close circle happens to see me at my worst it's kind of scary for them to witness. "My worst" happens when I've done too much.

                  I found this thread by searching for "ocrevus" - my neuro wants me to take it as soon as I am diagnosed and I am just not interested. I share the same concerns you do.

                  I hope my ramblings have helped in some way.

                  Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                  Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                  EDSS of 5.5, sometimes 6.0

                  Comment


                    #10
                    Originally posted by 502E79 View Post
                    I would re-read Snoopy's entry:

                    Originally posted by SNOOPY View Post
                    The type is determined by the way it behaves. Unless you have been followed by a Neurologist for some years it will take time to know what course your disease follows which in turn will give a Neurologist the knowledge of what type you may have. Do you have Spinal cord lesions?
                    She points out something that struck me immediately and probably others who responded to your thread. Jer
                    My PPMS dx came after about a year of accumulated neurologic deficits (continuous progression with no relapses), and after the other diagnostic criteria were met per MRI results and CSF analysis.

                    Maybe by going to an MS Center with MS Specialists (referred to by my neuro for confirmation of the MS 'type') helped with a quicker dx.

                    Take Care
                    PPMS for 22 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                    Comment

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