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    #16
    Appreicate you all

    Thanks for all your responses. Just like MS itself, there are no clear answers. Lol. I just turned 51 and have begun getting worried about where I am headed. The balance thing is really scary. I lost my balance in the bathroom again last night. Well, I still feel blessed in so many ways. I should concentrate on that, not the "what ifs" (easier said than done).

    Comment


      #17
      Originally posted by kittysmith View Post
      The balance thing is really scary. I lost my balance in the bathroom again last night.
      Yes; lack of balance is scary. Did you actually have a fall, or were you able to catch yourself before you fell? Was it when you were standing, trying to rise from a seated position, while in the bathtub or shower?
      ~ 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


        #18
        Oh, the many times I've fallen...

        Originally posted by Mamabug View Post
        Yes; lack of balance is scary. Did you actually have a fall, or were you able to catch yourself before you fell? Was it when you were standing, trying to rise from a seated position, while in the bathtub or shower?

        The 1st bad fall was over the summer. I ended up in a boot with a severe sprain in my ankle. Then, I fell at work (foot got tangled in wire hanging under desk), I fell trying to get to the bathroom in the middle of the night a few months ago. A month or so after that, I fell on the bathroom floor, landing between the toilet and tub. Yesterday, I was sitting in the bathroom supervising my son's bed time routine (I was just sitting on the closed toilet). He triend to pull me up to hug me and I lost my balance again. I was able to catch myself and sit back on the toilet lid. My son yelled, "Watch out, Mom"! It seems like my right leg and left leg are working against eachother. I'm sure you all get it.

        I need to wear bubble wrap every day. Lol.

        Comment


          #19
          Originally posted by kittysmith View Post
          I need to wear bubble wrap every day. Lol.
          Maybe you would benefit from taking a serious look at fall hazards and trying to assess what you could change in your environment to help prevent falls.

          Possibly a grab bar next to the toilet seat, maybe using a mobility aide (cane or walker), etc.

          In my community, our local fire department offers and promotes a home visit to assess fall risks as a service . I haven't used it yet, but I've considered it. Maybe your fire department would do something similar, or maybe your local senior center could recommend a person or agency who would.
          ~ 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


            #20
            Oh ouch, kittysmith - I'm so sorry to hear of your recent falls! I have had my shares as well and that's when I decided I needed to invest in a rollator walker. My cane wasn't enough support for me to keep my balance. I also had to slow way down and make deliberate and more mind controlled movements.

            Do you use a cane or a rollator? May be more practical than bubble wrap

            Please keep safe and have a happy new (and safer) new year!
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

            Comment


              #21
              Sorry to hear kittysmith. I would really talk to your neuro about both PT and OT. PT may help, depending on cause. Don't assume MS only. It may or may not be. Only an assessment will tell.

              OT could also help with safe movements and evaluation of your home space to help minimize fall risk.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #22
                Have an appointment

                I have an appointment with my MS doc at the end of January. We rent the house we live in. My best friend and her husband own it and barely charge us any rent. The house was built in 1945. It's small. I've been telling my husband, even though I don't want to admit it, we need to buy a home, at some point, that will accomodate my needs. It's a tough choice.

                I've been using my cane, though, not as much as I should. I usually only use it when shopping or walking a long distance. Guess I need to use my extra one in the house. Geez, this disease sucks. I'm only 51. But, again, blessings, blessings everywhere.

                The reason I am interested in an SPMS diagnosis is it would help me receive disability at some point. I'm just finding it harder and harder to keep going in a crazy, stressful, full time job.

                Comment


                  #23
                  Originally posted by kittysmith View Post
                  The reason I am interested in an SPMS diagnosis is it would help me receive disability at some point. I'm just finding it harder and harder to keep going in a crazy, stressful, full time job.
                  Hmmm. Interesting reason. Has your doctor told you that would help you be approved?

                  I've been on SSDI since 2008. Although I've likely transitioned to SPMS, I don't know that it's in my medical chart. It certainly wasn't back then. RRMS can be an appropriate dx to be approved for disability.
                  ~ 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


                    #24
                    Originally posted by kittysmith View Post

                    The reason I am interested in an SPMS diagnosis is it would help me receive disability at some point. I'm just finding it harder and harder to keep going in a crazy, stressful, full time job.
                    You could pose this question in the SSDI forum. To my knowledge, it doesn't matter RRMS vs SPMS vs PPMS diagnosis for SSDI approval. For disability, it is making sure your physical and mental limitations are documented.

                    There is a 5 step process to evaluate whether disability is met. If not met in steps 1 or 2, then step 3 looks at criteria for specific medical conditions. So section 11.09 deals with nervous system disorders including multiple sclerosis and defines what constitutes disability. Section 12.02 is mental impairment, 2.02 is vision.

                    If you fall thru and don't meet the MS criteria and are evaluated under step 5, possibly SPMS may help in that it would mean most likely won't improve, where as RRMS may be deemed a little higher chance to improve. But you would really want to try to get approved in Step 3 to minimize the number of subsequent reviews of your claim.

                    I also have LTD, they didn't care RRMS either. Just needed the medical records to support disability and my neuro's support and statement not expected to improve.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #25
                      Just me guessing

                      Originally posted by Mamabug View Post
                      Hmmm. Interesting reason. Has your doctor told you that would help you be approved?

                      I've been on SSDI since 2008. Although I've likely transitioned to SPMS, I don't know that it's in my medical chart. It certainly wasn't back then. RRMS can be an appropriate dx to be approved for disability.

                      Mamabug, I was just curious to see if it matters if you transition. Right now I'm doing okay. But, I can just tell I'm having more problems. Balance issues, weakness, really bad fatigue, etc.

                      Comment


                        #26
                        Originally posted by kittysmith View Post
                        Mamabug, I was just curious to see if it matters if you transition. Right now I'm doing okay. But, I can just tell I'm having more problems. Balance issues, weakness, really bad fatigue, etc.
                        I don't understand your question. You wonder if it matters to whom? Social security administration? My MS specialist? Etc?
                        ~ 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


                          #27
                          I thought I was responding to your question.

                          Originally posted by Mamabug View Post
                          I don't understand your question. You wonder if it matters to whom? Social security administration? My MS specialist? Etc?

                          If it mattered as far as getting disability if and when I need it. If it mattered as far as disease progression in general. I was just responding to your question.

                          Comment


                            #28
                            Originally posted by kittysmith View Post
                            If it mattered as far as getting disability if and when I need it. If it mattered as far as disease progression in general. I was just responding to your question.
                            Ohhh; ok. ....
                            ~ 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


                              #29
                              sorry

                              Originally posted by Mamabug View Post
                              Ohhh; ok. ....

                              I have a talent in confusing people. It's a quality I use almost exclusively. Lol. Never ask me for directions.

                              Comment


                                #30
                                Originally posted by kittysmith View Post
                                I have a talent in confusing people. It's a quality I use almost exclusively. Lol. Never ask me for directions.
                                Lol; no problem. When we combine your talent for confusing people with a talent I have for being easily confused, we make an interesting pair.
                                ~ 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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