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Do I have PPMS? Experiences with PPMS...

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    Do I have PPMS? Experiences with PPMS...

    I had already asked this question in the general thread but then found out there is a specific thread for PPMS, so asking it here again.

    I've noticed that I haven't really had any relapses these past years but that I've been getting progressively worse though. It's a lot harder for me to do stairs for example, it's like I'm trying to lift up 200kg attached to my legs. Each haha.

    I have been having issues with my arms for as long as I can remember as well but lately it's been getting a lot more worse to the point I can't even lift the lid of a pot properly. All my psychical problems just seem to be getting progressively worse and it's definitely more noticeable when I'm tired.

    My MRI's for some reason also keep coming clean, even though I have all these psychical problems. In my first year of diagnosis I had over 16 lesions, they probably stopped after 15 and gave up counting haha

    Now my doctors think it's all the Tysabri's doing that my MRI is completely clean, however it doesn't explain my symptoms. If I were to have RRMS and these symptoms it should show on my brain, no?

    Could anyone here that has PPMS please share their experience? And does anyone think that I might have progressed into it? Would it be wise to tell my neurologist and ask or maybe not because they might pull me off Tysabri?

    Got my diagnosis when I was 18 as RRMS but I had symptoms since I was 13. I'm 23 now.

    Opinions would be much appreciated!

    #2
    Hi Dex. You mention that you "haven't really had any relapses these past years". I'm wondering, does that mean that, in the past, you had relapses, and now you don't?

    Primary Progressive MS (PPMS) is characterized by steadily worsening neurologic function from the beginning. Although the rate of progression may vary over time with occasional plateaus and temporary, minor improvements, there are no distinct relapses or remissions.

    Secondary Progressive MS (SPMS) follows after the relapsing-remitting course. Most people who are initially diagnosed with RRMS will eventually transition to SPMS, which means that the disease will begin to progress more steadily , usually without relapses.

    Which do you think sounds more like you?
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

    Comment


      #3
      Originally posted by Mamabug View Post
      Hi Dex. You mention that you "haven't really had any relapses these past years". I'm wondering, does that mean that, in the past, you had relapses, and now you don't?

      Primary Progressive MS (PPMS) is characterized by steadily worsening neurologic function from the beginning. Although the rate of progression may vary over time with occasional plateaus and temporary, minor improvements, there are no distinct relapses or remissions.

      Secondary Progressive MS (SPMS) follows after the relapsing-remitting course. Most people who are initially diagnosed with RRMS will eventually transition to SPMS, which means that the disease will begin to progress more steadily , usually without relapses.

      Which do you think sounds more like you?
      Yes! In the past I would have many neuritis optica's, which were clear relapses I'd get steroids for. Or I'd have a drop foot or a leg that was dragging along. Or my arm that I couldn't write with all of the sudden. It was just a lot more clear and the relapses would also "heal" and I'd be better after a few weeks with steroids.

      I'm just in a really weird situation, but it's weird that I can't do stairs properly anymore even though I've had no relapses in my legs...

      I really don't know what I'd fit in... I feel like secondary progressive makes sense as I've been getting progressively worse as far as my arms and legs but there hasn't been a distinctive relapse. But then yesterday I couldn't lift the lid off the pot, when today I could... so I guess it seems to be more in plateaus? But just not for everything. I'm sorry if this sounds confusing...

      Comment


        #4
        Dexter,
        You are asking the correct questions but you really need to get an evaluation with an MS specialist. If you have already seen a neurologist, that's great. But IMO getting an evaluation from an MS specialist is the 'gold standard'.
        No one on this board is qualified to diagnose you. You do have a complicated list of symptoms. I hope you find a good specialist. Good luck

        Comment


          #5
          Well that's the thing, my neurologist thinks there is nothing wrong with me and because the MRI's keep coming back clean she thinks the Tysabri is doing it's job. But I in fact am still getting physically worse but they just don't believe it because they aren't seeing anything on the scans...

          I could give them a whole speech that an MRI doesn't see everything and that I might have lesions on my spinal cord but they don't want to investigate it. If the MRI's are clean, it means I am symptom free so there is nothing I should complain about is their opinion.

          Comment


            #6
            Dex -

            I suspect it's SPMS. You sound as if you may be stressed by trying to figure this out. But, in the long run, does it really matter? It is what it is. Your symptoms won't change by putting a label on them.

            I encourage you to take a few deep breaths. Go to your "happy place", whether it's relaxing on a cloud in the sky, or taking a nap on a lounge chair on a tropical beach.

            Then, talk to your doctor about symptom management, and don't concern yourself with the DMD's (disease modifying meds). Some of them have yucky side effects. Now you have a good excuse not to use them.

            SPMS is a cloud. Actually, it's a dark storm cloud. But, my strategy is usually to look for the silver lining behind the cloud.
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment


              #7
              Dexter,
              I re-read your original post. Towards the end you ask if you have progressed into PPMS. I am not a doctor but I believe that PPMS starts out and stays PPMS. One's disabilities will progressively get worse and never remit.
              And although your doctors don't see anything on the MRIs that explain your symptoms, if you truly feel that there is something wrong, you need to keep trying to find a doctor who will keep investigating. Good luck

              Comment


                #8
                Originally posted by Mamabug View Post
                Dex -

                I suspect it's SPMS. You sound as if you may be stressed by trying to figure this out. But, in the long run, does it really matter? It is what it is. Your symptoms won't change by putting a label on them.

                I encourage you to take a few deep breaths. Go to your "happy place", whether it's relaxing on a cloud in the sky, or taking a nap on a lounge chair on a tropical beach.

                Then, talk to your doctor about symptom management, and don't concern yourself with the DMD's (disease modifying meds). Some of them have yucky side effects. Now you have a good excuse not to use them.

                SPMS is a cloud. Actually, it's a dark storm cloud. But, my strategy is usually to look for the silver lining behind the cloud.
                I personally feel as it's SPMS too, it's just a feeling in my gut I don't know. The MS I had is gone and it has transitioned into something that feels completely different.

                I guess when you put it that way it doesn't matter, as it's just a label. But in my situation, while still receiving DMD's (Tysabri eg) I don't feel like staying on it when my clear MRI's aren't even due to the Tysabri but just to the fact that I have SPMS. I've always hated taking medication and I'd love to quit. But then I think what if the Tysabri IS doing something to keep the MS quiet?

                I think for now I might just keep quiet and not tell my doctor as I have uni and the last thing I need is for them to pull me off Tysabri because they think I'm right.

                Just one last question: I read that most people with SPMS have lesions on their spinal cord. Would it be wise to perhaps ask for an MRI of that? See what comes out of it?

                Comment


                  #9
                  Dex: I am SPMS and on Ty. I do have lesions in my spine, but don't think it is a hard and fast rule. Since you have never had an MRI of your spine I think it would be a really good idea for them to do one of the C and T areas. Do stay on the Tysabri. My MRIs are stable due to the med I believe. As long as I can I will keep taking it.

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

                  Comment


                    #10
                    I can't answer the spinal cord question. Sorry.

                    But Dex. I read that Novantrom , which is often effective for worsening relapsing MS, is the only DMD that has been approved by the FDA specifically for SPMS.

                    If I were making the decision, I'd request to be taken off Tysabri. After all, why get a monthly infusion if it may not be effective for you?

                    And, I'd request to try Novantrom.

                    Please let us know what you decide. My current MS specialist is awesome, and I'd never second-guess her.

                    But, in the past, I had a general neurologist. He was the one who was finally able to dx me, even after Mayo Clinic couldn't, and he made a great many good decisions.

                    However, I often felt like, by reading quality sources online, I knew more about newer MS treatments than he did.

                    Most doctors are not offended when you have made a request based on something that you have learned.

                    Best wishes. Please let us know what you decide.
                    ~ Faith
                    MSWorld Volunteer -- Moderator since JUN2012
                    (now a Mimibug)

                    Symptoms began in JAN02
                    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                    .

                    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                    Comment


                      #11
                      Thank you again everyone for posting a reply. Thought I'd give an update.

                      One day I was sitting in class and all of the sudden my hands and arms started to tingle really bad but it was more of a different tingle, like the one where your arms just don't feel any sensation. The strength in my arms was also pretty much gone, couldn't do much with them. Then later that day it spread to my legs as well for some odd reason.

                      Luckily I had Tysabri the next day so they checked it out and they definitely could tell there was something wrong. Sensation was pretty much nihil in my right arm but my left arm was slightly better (could feel the pricks better in my left arm then my right).

                      They ended up giving me the Tysabri anyways and once I had received the Tysabri everything pretty much went back to normal 2 days after that.

                      Long story short, doctor said this was a relapse. So I'm kind of confused because it healed so quickly but I guess this means I'm still in RRMS? I'm really confused tbh, to the point I don't even care anymore. Doctor said that with the next Tysabri infusion they will see if an MRI would be needed but I think they won't do it seeing as my symptoms are pretty much gone.

                      Anyways, happy new year everyone! Cheers to better health this year!

                      Comment


                        #12
                        Glad that things seem to be looking up.
                        ~ Faith
                        MSWorld Volunteer -- Moderator since JUN2012
                        (now a Mimibug)

                        Symptoms began in JAN02
                        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                        .

                        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                        Comment

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