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    RRMS or PPMS??

    Hey all, relatively new here to the forum and to my MS diagnosis in April earlier this year.

    Initially I had a CIS in Dec 2018 of a numb left foot that lasted a few weeks and the went away completely until July 2019 when the left side of my torso when numb. A couple of specialists, x-rays, and MRI's later, the neurologist diagnosed me with RRMS. None of my symptoms since July 2019 have gone away, only worsened. Being August 2020 I am starting to wonder when the "remitting" part comes into play, if at all.

    I have been doing some reading and can't help but wonder if I actually have PPMS, as my symptoms have been around for over a year with no improvement. On my MRI in March this year, I also had more lesions on my C-spine than on my brain. I, however, am not a neurologist.

    I emailed the nurse at the clinic and asked if it was a possibility and she was very terse in her reply and simply said "You do not have PPMS. You have relapsing MS. Dr. **** will order an MRI at your follow-up in November." and that is copy/pasted directly (aside from editing the Dr's name obviously). That was the entire email. It did nothing to alleviate my concerns whatsoever.

    I am currently taking Tecfidera (started 14 weeks ago), and I don't see the neurologist again until November, but if I slowly keep getting worse, would they take me off Tecfidera and reevaluate my symptoms, and possibly my diagnosis? Am I wasting time waiting out the 6 months when I could be taking a more effective medication?

    I would appreciate anyone's thoughts or experiences with RRMS that doesn't remit, or with PPMS, or if they had been, for lack of a better word, misdiagnosed. How long til the doctor(s) reevaluated the dx and changed it?

    I know that MS progresses and RRMS shifts into progressive forms, but I am asking more so about people that were diagnosed with PPMS from the start or were diagnosed with RRMS but actually had PPMS initially.

    Thank you so much for any responses or shared experiences.

    #2
    Hi Panache.

    What is normal for Relapsing Remitting MS; Remission in MS can be complete (no symptoms) or residual (permanent symptoms), with residual symptoms being the most common. Symptoms can also come and go.

    On my MRI in March this year, I also had more lesions on my C-spine than on my brain
    MS is a disease of the Central Nervous System(CNS) which includes the brain, optic nerves, and spinal cord. Lesions can and do show up anywhere within the CNS. I was diagnosed in 1984 with RRMS and at the time of diagnosis and still to this day my spinal cord is much more effected than my brain. My disease course fit RRMS (I transitioned to Secondary Progressive MS in 2013). Spinal cord lesions tend to be more symptomatic than brain lesions.

    Initially I had a CIS in Dec 2018 of a numb left foot that lasted a few weeks and the went away completely until July 2019 when the left side of my torso when numb.
    The fact your numbness resolved completely until 2019 indicates RRMS - then you had another relapse in July 2019 which has left you with some symptoms. Is it only numbness you are experiencing or are there symptoms along with the numbness. Unfortunately, numbness can be difficult to treat, I'm sorry I know how uncomfortable and sometimes painful numbness can be).

    PPMS has more to do about disability and progression without remissions. It can take a Neurologist some years of following your disease course to know what type you may have.
    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


      #3
      Hi Panache,

      I can't speak for PPMS. I am still labeled RRMS, but maybe SPMS with very slow progression. I have always had more c-spine lesions than brain lesions. My initial relapse left some residual symptoms. I had subsequent relapses, some resolving symptoms, some not. Over time, my initial symptom has worsened.

      As hard as it is, MRIs and clinical exams are sometimes needed over several years to delineate progressive forms of MS from relapsing/remitting. In RRMS, not all relapses remit fully or even partially, and where damage has occurred, symptoms can worsen.

      You mentioned your MRI this year showing more cervical than brain lesions, but don't mention how this latest MRI compares to prior MRIs. If you had new lesions while on Tecfidera, it is worth discussing if Tecfidera is the right med for you and/or if you need to be on something else, as well as your concern about progressive disease course. The other variable would be if you were on Tecfidera long enough to reach full efficacy prior to any new lesion/relapse. Unfortunately, the answers to this will only be known with your next MRI since you just started Tecfidera 14 weeks ago.

      As for, the nurse, that was a little terse. I usually call with questions, as I feel like I can have a conversation and can judge tone. Emails can be hard. If you are experiencing worsening of existing symptoms or new symptoms, you should call your neuro, as you may be in a relapse. If suspected, they may want to see you and could do an MRI earlier.

      Lots of luck.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Originally posted by SNOOPY View Post
        What is normal for Relapsing Remitting MS; Remission in MS can be complete (no symptoms) or residual (permanent symptoms), with residual symptoms being the most common. Symptoms can also come and go.
        I would like to correct this quote, I did not phrase it the right way.

        Remissions can be complete (no symptoms) or partial (residual symptoms) with partial being the most common.
        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


          #5
          My first really bad episode was in June 2011 though I had some symptoms before that. This time it was was severe with double vision and extreme dizziness. The double vision went away and the dizziness got somewhat better but never remitted completely. It got worse again in October 2011 and I was diagnosed in November. The dizziness has never gone away. I am dizzy every single day. Some other symptoms have come and gone but the dizziness is here to stay unfortunately. My doctor says I am RRMS.

          I hope you get an answer on if your Tecfidera is working.

          Comment


            #6
            Originally posted by SNOOPY View Post
            Is it only numbness you are experiencing or are there symptoms along with the numbness. Unfortunately, numbness can be difficult to treat, I'm sorry I know how uncomfortable and sometimes painful numbness can be).
            It is definitely not just numbness in my torso anymore. Although the numbness has taken over most of my torso and my entire lower body now (from bra line downwards) the weakness in my legs is the biggest issue. My feet feel cold and wet all the time and I constantly have that prune-like feeling (like after you take a bath) though they feel warm and dry when I touch them with my hand. My walking is certainly affected some days depending on how strong or weak my legs feel that day. Sometimes I walk with a bit of limp, enough that my coworkers will notice and ask questions and I brush it off as a sore foot or whatnot as I have not disclosed my diagnosis to many people.

            When I get into my car I sometimes have to lift my left leg into the car with my hand because I can't lift it high enough on its own. I can't walk for more than 20 minutes before my legs want to give out from under me. Back in April I rode my bicycle around the block (I realized I had a cracked tire and decided to circle back home) and fell over when I tried to stand because my legs could not support me. I would probably not even be able to make it around the block now.

            I am also having difficulties with going to the bathroom which is new in the past month or so. I have also noticed my hands sometimes have a slight tremor when doing things at work that require concentration and small, precise movements that I never had before (I have been doing these tasks for years with no prior issues). I am able to still complete the tasks but I usually have to stabilize my hand on something while my fingers do the work.

            One of the nurses said she put a report into the neurologist but he works out of the clinic anyway so I guess I just have to wait to see him in November.

            So I wonder if either I could have had RRMS for years and not known it and now maybe it is progressing into SPMS or I could just have PPMS. Also for reference, I turn 38 this year.

            Comment


              #7
              Hi Panache.

              Some of my own story:

              I was diagnosed at the age of 23 (59 now), although I have had symptoms since childhood. When I received a diagnosis of this disease I was in a severe exacerbation (relapse, attack, flare-up).

              Symptoms at the time:
              - Numb from the waist down including the girlie parts
              - Tremors in hands (shaking)
              - Bilateral leg weakness
              - L'hermittes sign
              - Vibration/buzzing/tingling from waist down
              - Extreme fatigue

              Walking was so very difficult, I shuffled more than actual walking because picking my legs/feet up was darn near impossible. My Neurologist told me the best thing I could do is walk and I looked at him with an expression much like He said I know but it is what you need to do.

              It took me a year to regain my mobility. In the process there were a lot of tears, fear, anger, and frustration. In my case it was the anger that kept me going. Then I reached my one year mark and was up to walking 2 miles a day. Two weeks later I had another exacerbation (wiped out all of my hard work), worse than the last and the process to regain mobility began again and took another year.

              I am very much an advocate for exercise and something I would strongly encourage you to do. A Physical Therapist is a really good starting place. Your Neurologist can give you a referral. Each of us are different so do not base your journey with this disease with anyone else.

              Through all of the years with this disease my main struggles have always been my legs. Had I not walked/exercised there is no doubt in my mind I would have been wheelchair dependent very early on.
              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
                Hello Panache ~

                I was dx'd PPMS from the start. The neuros at the Mellen Center for MS (Cleveland Clinic) told me that I was easy to diagnose. I fit the 'classic' pattern and the necessary criteria.

                So I guess in that regard, I was fortunate to not have to be in limbo, or wonder and wait very long for a diagnosis.

                My symptoms all started out gradually, insidiously, and didn't happen all the time at first. They were more noticeable after prolonged activity, or from getting too warm.

                I didn't go to the doctor for several months, since it all seemed so vague, and the symptoms would subside upon resting, or cooling down.

                Over the course of several months, these were the earliest symptoms that appeared:

                My right arm would get unusually tired at work.

                At times my gait would be off - with a slight limp after walking awhile (coworkers would ask if my knee or foot hurt, but I had no pain).

                On occasion, I had urinary frequency and urgency.

                Sometimes I would trip while walking, which caused me to fall a few times.

                After a hot shower, or being in the hot sun, I experienced weakness, and my leg would drag while walking.

                I sometimes felt a buzzing, tingle down my back and legs when bending my head downward.

                I often became easily fatigued from doing normal, usual activities.

                I started having difficulty with finger dexterity, like putting coins in the vending machine, or putting pierced earrings in my earlobes.

                At times, I had difficulty lifting my right leg into the car.

                When these happened more and more frequently, I knew that I really couldn't ignore my symptoms any longer, and needed to go to the doctor.

                These were the earliest symptoms that I recall. They were all very gradual - no sudden event happened, which seems to be how a relapse usually happens.

                My MRI never showed inflammatory type lesions. My CSF was positive for O-Bands, and an elevated IgG.

                Panache, I'm wondering if you had all those symptoms (that you described in your last post) when you were diagnosed in April?

                Take Care
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  Also something to think about is that there is way more treatment options with RRMS rather than PPMS. Even if your coarse of progression is more PPMS, a label of RRMS could be more beneficial for you to have.
                  Take this from a guy who was labelled PPMS from the start and there were no treatments for it then.
                  It was one agains't 2.5million toughest one we ever fought.

                  Comment


                    #10
                    Originally posted by Panache View Post

                    One of the nurses said she put a report into the neurologist but he works out of the clinic anyway so I guess I just have to wait to see him in November.

                    So I wonder if either I could have had RRMS for years and not known it and now maybe it is progressing into SPMS or I could just have PPMS. Also for reference, I turn 38 this year.
                    Since you have new symptoms and worsening since your MRI in March, you may want to make sure the nurse understood that and let her know you are wondering if you are having a relapse. You shouldn't have to wait until November if you have new actvity. I would push for an earlier appointment, whether it is a relapse or progression. At a minimun, the neuro should place a call to you to understand what is going on and maybe a new MRI before your appointment in November so you both can get more benefit out of the appointment.

                    Lots of luck.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #11
                      Coming into this thread late, a couple of random comments:

                      I wonder if either I could have had RRMS for years and not known it and now maybe it is progressing into SPMS or I could just have PPMS.
                      I'm not a doctor but I'd guess the former -- RRMS to an early SPMS. But as oceanpride said:

                      there is way more treatment options with RRMS rather than PPMS. Even if your coarse of progression is more PPMS, a label of RRMS could be more beneficial for you to have.
                      Bingo! Over the decades I've seen lots of neurologists and some have expressed the opinion that the labels are nonsensical and all are talking about the same damned disease.

                      My current neurologist has said I'm "progressing towards SPMS" whereas another neurologist on one exam last fall looked at my MRI and confidently said I'm SPMS. Thus, my guess is my current neurologist keeps in the "progressing towards SPMS" category just to have a wider range of options. (I'm cool with that.)

                      Again, that is technically a "gray" area and the options for medicines and what your (cough, spit) immoral, for-profit insurance company will pay for is a definite factor in this -- the exact label is irrelevant. You do, after all, feel how you feel no matter what the label is.
                      59M / RRMS / Dx1987 / Ocrevus

                      Comment


                        #12
                        Originally posted by KoKo View Post
                        Panache, I'm wondering if you had all those symptoms (that you described in your last post) when you were diagnosed in April?

                        Take Care
                        Not the urinary issues or the tremor, I also didn't have a limp or anything noticeable and getting into the car was easier, so the weakness has definitely worsened since then. The urinary issues and tremor developed gradually and separately since then, the numbness spread slowly and somewhat unnoticeably in some areas.

                        Comment


                          #13
                          Originally posted by Panache View Post
                          Not the urinary issues or the tremor, I also didn't have a limp or anything noticeable and getting into the car was easier, so the weakness has definitely worsened since then. The urinary issues and tremor developed gradually and separately since then, the numbness spread slowly and somewhat unnoticeably in some areas.
                          Thanks for clarifying, Panache.

                          It's a good idea to document your symptoms, similar to how you described them in the previous post, and take that with you to your appointment.

                          It will benefit both you (trying to recall everything) and your neuro (who will get a bigger picture of what you're dealing with).

                          Hope you're doing well today, Panache.

                          Take Care
                          PPMS for 26 years (dx 1998)
                          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                          Comment


                            #14
                            Originally posted by Golgotha View Post
                            Over the decades I've seen lots of neurologists and some have expressed the opinion that the labels are nonsensical and all are talking about the same damned disease.
                            Respectfully, those neurologists would certainly have a hard time convincing me that the course my MS is taking (steady progression from onset) is no different than that of someone who has one or two relapses per year.

                            Take Care
                            PPMS for 26 years (dx 1998)
                            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                            Comment


                              #15
                              I'm coming into this thread late too.

                              I wonder if RRMS vs PPMS really matters. Some of the meds are approved for both RRMS and active PPMS. If you get on an effective med, it might be able to treat either one.
                              ~ 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.

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