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Difference between PPMS and SPMS?

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    Difference between PPMS and SPMS?

    Hey guys, the most I've really been able to grasp is it means primary and secondary, and primary is more rare.

    What differences are there?

    I have had thing that have gone away and come back a month later but differently. Like the first numbness I had which made me realize I need to see a doctor was in both feet, but more prevalent in the right. Then it died down, now it's back, but more in my left

    This all started with bad eyesight in May '13. It has never gotten better, only got worse.

    I'm just so '????'. I don't get how there are attacks for people either. Thing happen for.a few weeks and either change or go away.

    Sorry guys, I'm just clueless. If I've got PPMS, what does that even mean? Is it more serious?
    Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
    Just because we don't feel flesh, doesn't mean we don't fear death

    #2
    Have you looked through this page?

    http://mssociety.ca/en/information/ms_typetreat.htm

    Basically PPMS, there are no episodes or relapses. Just progressive disability.

    SPMS, people start off as RRMS but become SPMS later with progressive disability.

    Comment


      #3
      Thank you so much, that was extremely helpful.

      I know I shouldn't self diagnose, but it sounds like I've got PPMS and I'm 28

      It sounds more serious, it doesnt stop. It can only ever get worse. I'm sorry, I've had symptoms for a while now and it's all really starting to sink in. I may be one of the lucky few in a wheelchair.

      I'm just really scared. Before I always found whatever humour in this. But I'm really scared now. My vision keeps getting worse so I'll be the lucky few again and go blind.

      I gotta stop worrying.
      Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
      Just because we don't feel flesh, doesn't mean we don't fear death

      Comment


        #4
        I don't know, it sounds like some of your symptoms have come and gone? I kbow that with RRMS, a flare can last for months. I'm PPMS and everything I've had just stays and gets a bit worse.

        I know it is easier said than done, but try not to worry too much. I know it's scary.

        Comment


          #5
          Thank you misslux.

          And I do remember you from when you replied to my introduction thread. I am suffering memory loss a lot lately. Guess it's not that bad!

          My vision has only gotten worse since this all started. People talk about attacks. I hope you get what I'm really worried about. That and a wheelchair
          Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
          Just because we don't feel flesh, doesn't mean we don't fear death

          Comment


            #6
            I came back because I found it odd to have never mentioned my fear of blindness and being wheelchair prone. I did.

            Then I read the first reply was also from misslux. But that didn't cause a memory to me then.

            Memory loss still a thing!

            But thank you again misslux. As someone who is PPMS I feel better knowing its not the end of my existence because you seem just as normal as everyone else. And how I really gotta lay off diagnosing myself. Which I mentioned!
            Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
            Just because we don't feel flesh, doesn't mean we don't fear death

            Comment


              #7
              I, alas, am not a doctor. From what I understand PPMS is pretty solid from the get-go.
              Symptoms come and they don't go. And the trouble is mainly in the spinal cord. So motor skills, more than numb tingly bits and optic neuritis.

              SPMS usually arrives after quite a few years of relapsing remitting MS.
              The end result seems to be much the same, it up just takes a lot, lot longer to get there.
              And of course the various dmd/ts may slow it down even more.

              Comment


                #8
                I've had bad eyesight, numbness in my feet and no balance since the first month.

                Now my feet got less numb but the most noticeable numbness shifted from right to left. My left hand, two fingers went numb, then it was gone, now it's back for even longer. It's different and I can sort of feel it in my whole left arm.

                The balance only got worse and now includes dizziness from slightly moving my head. And I always have a constant headache. Tylenol doesn't work so I'm on more or less 5 Advil a day.

                Worry worry worry
                Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
                Just because we don't feel flesh, doesn't mean we don't fear death

                Comment


                  #9
                  Chowda: Have you talked with your neurologist about which type of MS you have? Obviously you don't have SPMS, but it doesn't quite sound like PPMS either.

                  http://www.nationalmssociety.org/abo...sed/index.aspx

                  What does your neurologist say about your type of MS? If he/she hasn't said, ask them. It will be in your notes. Most people with RRMS will have decreasing vision loss with ON, and increasing numbness after an attack due to nerve damage.

                  http://tamingmultiplesclerosis.com/m...esarticle.html

                  The best thing to do is to talk with your doc. If he/she thinks it is PPMS, then you can come here, and go the the NMSS for support. If you have RRMS then the same places are here for support.

                  Take care of yourself and try not to worry about a wheelchair until you have to. We all may end up in one sooner or later. I am in a scooter most of the time. It is really not all that bad. I made it out to be way bigger a demon than it actually is. I love my little scooter. It comes with 3 different colors...what more could a woman want? You can change your colors like changing outfits! Very cool!

                  Take care, and no worries, OK?

                  Lisa
                  Disabled RN with MS for 14 years
                  SPMS EDSS 7.5 Wheelchair (but a racing one)
                  Tysabri

                  Comment


                    #10
                    Those are my two fears as well! I am sure a lot of people are scared of that.

                    Try not to worry too much. I think I read in another thread that you see your MS neurologist soon?

                    Get prepared and bring printed copies of all your symptom timelines, questions, etc. Some of these forms on this page may be helpful for you too to maximize your visit. What I like to do is fax in my updates/questions/etc. a couple days prior to my appointments so that they can read ahead save time when I go see my doctors.

                    http://www.emedicinehealth.com/makin...article_em.htm

                    Also, see if the MS clinic or local MS Society can refer you to a social worker or therapist who works with people who have chronic illnesses. Also look into in-person support groups. Not sure where in Ontario you are but there are a lot of chapters here:

                    http://mssociety.ca/ontario/default.htm

                    It really helped me to talk to people in person who understand what I was going through.

                    Hang in there!

                    Comment


                      #11
                      Thank you Lisa. Now I'm not sure I have PPMS.. Not being a doctor I have very consistent self diagnosis haha

                      And thank you misslux, those are some great tips. I do see my MS neurologist for the first time Jan16. Your memory is good.

                      And my family doctor said when he first knew to immediately get on disability and get a cane. I asked about therapy and he said it was heavily recommended. So ive left a message with my case worker to get that ball rolling

                      And a general neurologist that diagnosed me said from my mri and evoked potential I show advanced signs. He didn't specify which test. The lady who did the test said she could see a 4ms delay between my right and left leg

                      But thanks so much guys. You're giving me great tips and emotional support to quell my fears
                      Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
                      Just because we don't feel flesh, doesn't mean we don't fear death

                      Comment


                        #12
                        An additional thing to keep in mind is that if you are officially diagnosed as PPMS, insurance will not cover any DMDs for you (no DMDs are currently approved by the FDA for PPMS). A conversation with your doctor may help ease your mind to confirm if you're RRMS. And if they are not offering up a PPMS diagnosis, then I don't think I'd ask for one (but that's just me).

                        Not sure your history, how long you've had MS and/or if you use DMDs, but my observation is that it's common for new MSers to have anxiety about their category (RRMS, SPMS, PPMS). Whether you've had it for awhile or not, you don't have to suffer thru the anxiety, like was mentioned above - talk to your Dr., get some counseling. Do what you can now to prepare yourself for the future.

                        For me, the hardest part was coming to terms with the fact that some "events", "flares" just don't heal cleanly and leave residual symptoms that can last for months or simply never go away. If I am SPMS (or if I were PPMS), I wouldn't want to know because I want to be able to keep on taking my DMD as long as possible.
                        Symptoms 8/09. Dx 1/10. Avonex 2/10 - 1/11. Copaxone 2/11 to 5/13. Tecfidera 5/13 to 2/15. Gilenya 12/15 to current.

                        Comment


                          #13
                          I don't think your PPMS or SPMS.

                          Your too young for both. Have you had MS so long at the age of 28 that you have now moved to SPMS?

                          PPMS at 28...unlikely...very.

                          MS that starts with vision issues or vision issues are primary, points to RRMS not the progressive types.

                          IMHO nothing you say points to progressive forms.

                          Comment


                            #14
                            Don't despair. When I get relapses I tend to get worse for several more weeks before I start to get better. Every time I think I'm at the bottom of the relapse, something comes along and makes it worse. And yet I am still firmly rrms since I can forget I have ms for months at a time.

                            Comment


                              #15
                              Originally posted by fairpace View Post
                              keep in mind is that if you are officially diagnosed as PPMS, insurance will not cover any DMDs for you

                              luckily im in canada. i dont think private insurance can deny coverage based of medical history and gov't never will. makes me feel bad about those who cant get help they need

                              Originally posted by Windwalker View Post
                              I don't think your PPMS or SPMS.

                              Your too young for both. Have you had MS so long at the age of 28 that you have now moved to SPMS?

                              PPMS at 28...unlikely...very.
                              I read that PPMS is usually around like 50 as well. I've only had symptoms for 8 months now, was dx'd (that means diagnosed right?) a month ago.

                              When I was, the neurologist said based on the MRI and evoked potential, I was showing advanced stages for my age.

                              Thank you everyone for your input. I see an MS neuro Jan16. Until she let's me know better, I'll probably still worry about PPMS. Weird to say I hope its RRMS. Its been 8 months and symptoms like my vision and feet numbness have never changed, only got worse.

                              I don't really know what a relapse, flare, attack or anything like that is . I mean, I can't relate with experience :\

                              But hey, I'm typing this message on a computer again! Not for any reason, getting used to a touch screen 1/2ft from my face is... But luckily no autocorrect, hate that
                              Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
                              Just because we don't feel flesh, doesn't mean we don't fear death

                              Comment

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