Announcement

Collapse
No announcement yet.

RRMS versus SPMS

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
    #1

    RRMS versus SPMS

    I've asked a similar, general question before but now I am being more specific. I am worried I might actually have SPMS. By way of background.....

    I had MRI in Oct 2020. Lesions were shown and the report said it signified MS. There is dissemination in space and time. I had ON in 2013. Then had some symptoms back beginning 2020 which lead to the MRI. I do not see my neurologist until April.

    Okay, so my concern....

    I have had ongoing symptoms. I haven't had a real relapse but just symptoms that seem to come and go daily. I have had general arm weakness and leg tremors for months and then the last 3 weeks or so I've had nothing. Nada. Then today everything is back again and I am feeling like I am regressing right back to where I started.

    I am starting to worry I have SPMS.

    For those of you who have/had SPMS what are your thoughts?

    I was "okay" with RRMS but now I'm freaking out!
    "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
    ~Leonard Cohen

    DX March, 2022. Ontario, Canada
    Tags: None
    #2
    Originally posted by Pistachio View Post

    I have had ongoing symptoms. I haven't had a real relapse but just symptoms that seem to come and go daily. I have had general arm weakness and leg tremors for months and then the last 3 weeks or so I've had nothing. Nada. Then today everything is back again and I am feeling like I am regressing right back to where I started.
    Curious as to why you would dismiss the above as a relapse?

    From the NMSS on relapses:
    "An exacerbation of MS (also known as a relapse, attack or flare-up) is the occurence new symptoms or the worsening of old symptoms. It can be very mild, or severe enough to interfere with a person’s ability to function."

    "To be a true exacerbation, the attack must last at least 24 hours and be separated from the previous attack by at least 30 days. It must also occur in the absence of infection, or other cause. Most exacerbations last from a few days to several weeks or even months."

    This page has links to the various types of MS and their descriptions.
    http://www.nationalmssociety.org/What-is-MS/Types-of-MS
    If you haven't already, it may be worth reviewing to see the overlap between RRMS and SPMS.

    Are you just in the process of getting your MS diagnosis then, based on your October MRI?

    Kathy
    DX 01/06, currently on Tysabri
    • Likes 1

    Comment

      #3
      Hi Pistachio.

      Relapsing/Remitting MS - Relapses are a worsening of old symptoms and/or new symptoms lasting continuously for more than 24 hours and separated by the last relapse by 30 days. Remissions can be complete (no symptoms) or Partial (residual symptoms), with Partial being the most common.

      Secondary Progressive MS is a transition from RRMS to SPMS. You would have had to be RRMS at some point to transition to SPMS. It's a fine line when the transition from RRMS to SPMS happens. Neurologists can be hesitant to term their patients as SP simply due to Health Insurance and being able to easily get the insurance to pay for a DMT.

      I would suggest patience until you see the Neurologist in April. A MRI and MRI report provides needed information but is not a diagnosis, that would be up to your Neurologist and possibly more testing to determine.

      Take care.
      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
      • Likes 1

      Comment

        #4
        Pistachio,

        I just remembered you posted that you had a positive Lyme's test and were going to take the recommended treatment protocol to your doctor. Have you been treated for that?

        This was the prior thread:
        https://www.msworld.org/forum/forum/...r-lyme-as-well

        This would complicated any MS diagnosis, as Lyme's is an MS mimic. You may be causing yourself extra worry for something you may or may not get diagnosed with. While hard not to do, try not to jump ahead too much.
        Kathy
        DX 01/06, currently on Tysabri

        Comment

          #5
          Originally posted by pennstater View Post

          Curious as to why you would dismiss the above as a relapse?

          Considering that I had the same symptoms constantly with no relief for about 8 months and then suddenly 3 weeks with no symptoms and then here they are back again, I assumed that didn't fit the criteria for RRMS. I thought RRMS meant that you have relapses with symptoms for shorter periods that resolve for a long time. Am I wrong here? I am new to this!

          "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
          ~Leonard Cohen

          DX March, 2022. Ontario, Canada

          Comment

            #6
            Originally posted by pennstater View Post
            Pistachio,

            I just remembered you posted that you had a positive Lyme's test and were going to take the recommended treatment protocol to your doctor. Have you been treated for that?

            This was the prior thread:
            https://www.msworld.org/forum/forum/...r-lyme-as-well

            This would complicated any MS diagnosis, as Lyme's is an MS mimic. You may be causing yourself extra worry for something you may or may not get diagnosed with. While hard not to do, try not to jump ahead too much.
            Yes, I am being treated. I am on week 7 of 12.

            "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
            ~Leonard Cohen

            DX March, 2022. Ontario, Canada

            Comment

              #7
              Originally posted by Pistachio View Post

              Considering that I had the same symptoms constantly with no relief for about 8 months and then suddenly 3 weeks with no symptoms and then here they are back again, I assumed that didn't fit the criteria for RRMS. I thought RRMS meant that you have relapses with symptoms for shorter periods that resolve for a long time. Am I wrong here? I am new to this!
              Relapses have no set timeframe. Following a relapse, symptoms may disappear fully, partially, or not at all. This is further information from the NMSS on RRMS.
              ​​
              Overview

              RRMS – the most common disease course – is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks – also called relapses or exacerbations – are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may disappear, or some symptoms may continue and become permanent. However, there is no apparent progression of the disease during the periods of remission.

              RRMS can be further characterized as either active (with relapses and/or evidence of new MRI activity over a specified period of time) or not active, as well as worsening (a confirmed increase in disability following a relapse) or not worsening.

              Approximately 85 percent of people with MS are initially diagnosed with RRMS.

              https://www.nationalmssociety.org/NationalMSSociety/media/MSNational/Charts-Graphics/MS_disease-course_RRMS.png
              This graphic shows the kinds of disease activity that can occur in RRMS; however, each person's experience with RRMS will be unique. Following a relapse, the new symptoms may disappear without causing any increase in level of disability, or the new symptoms may only partially disappear, resulting in an increase in disability. New lesions on MRI, as shown by the arrows, often occur as part of a relapse. However, new MRI lesions indicating MS activity may also occur without symptoms of which the person is aware.
              Kathy
              DX 01/06, currently on Tysabri
              • Likes 1

              Comment

                #8
                https://emoji-pics.s3.us-east-2.amazonaws.com/emoji-pics/facebook/up-arrow-facebook.pnghttps://emoji-pics.s3.us-east-2.amazonaws.com/emoji-pics/facebook/up-arrow-facebook.pnghttps://emoji-pics.s3.us-east-2.amazonaws.com/emoji-pics/facebook/up-arrow-facebook.png


                Thank you, Kathy! It makes me feel better! Whew! I've been trying very hard to accept MS with grace but sometimes the fear gets the best of me.
                "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
                ~Leonard Cohen

                DX March, 2022. Ontario, Canada
                • Likes 1

                Comment

                Previous template Next
                Working...
                X