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    M.I.A. but now here's an update

    For those who have been conversing with me over the years (a few that come to mind: mamabug, marti, koko, julesa, seasha, and more ... I might have spelled some of those wrong), here's an update.

    You probably know me well enough by now to know that I disappear for a while, so I'm sorry if I missed anything that you've said to me!! Mamabug - your exercise check in comes to mind! I just got so overwhelmed last fall. Last september I DID go to the appointment with the resident neuro that was overseen by the head neuro that was/is an MS specialist, and that was the first MS specialist I've been able to see [I live 3 hours or more away from any MS specialist]. I left there SO DISCOURAGED by how I was treated [they were both very nice, but that's not the issue]. It just seemed like the resident neuro was really excited about getting to the bottom of my issues, but then the head guy came in and shot everything down. Instead of getting updated MRI scans like the resident neuro suggested, he said I needed some small fiber nerve test (the name escapes me). He also did some blood work for things like sjogren's and a few more autoimmune diseases that can show up in bloodwork. I looked everything up when I got back to the van (my friend drove me) and I literally fit NONE of them ... maybe I had one symptom from each, but it just proved to me that he did not listen to a word I said.

    To add insult to injury, he set the next appointment for 4 months. In my mind I'm thinking, "4 months! That's 1/3 of a year away!" Geesh. I already have anxiety about going ... and 4 months makes it easy to talk myself out of going.

    I was so stressed out, frustrated, anxious, discouraged, etc. All the tests came back negative (no surprise there), and I opted out of the follow up appointment. I just couldn't do it; it didn't "feel right" to me.

    In the meantime, I was finally approved for medicaid for disabled people. My GP gave me a referral to an MS center in St. Louis - Dr Green [MS Specialist].

    My appointment with Dr Green was last week. This time instead of crying for frustration and discouragement, I cried for thankfulness. I have NEVER so far in this journey had a doctor that understood everything I was saying and going through, and in fact she could explain it better than me. She was shocked at how no one has gotten to the bottom of my problems. I reminded her that it's partially my fault for getting frustrated over and over again and giving up for years at a time before trying again. She felt like my frustration was justified because of all the feet-dragging and brick walls.

    She was also shocked that I have only had one scan of my neck and spine, and it was over 6 years ago. She said most of my symptoms would show activity in my spine, not my brain, so why has no one ordered an updated scan?!?!?! She actually seemed upset about it.

    I could understand her, she was thorough, and I liked her personality. I felt at ease with her, which really helped my issues with confusion and anxiety around doctors. Of course my friend was with me too - I always bring him so he can remember what was said and help add to the conversation. He liked her just as much as I did.

    She said she was going to get to the bottom of this once and for all. If it's MS, let's get it diagnosed. If it's not MS, let's figure it out and get that diagnosed. She told me to set up the neck and spine MRI for 2 weeks, and then set up an appointment with her right afterward. So, on the 14th I go in for the scans and then see her right after the scans at 11:30. That appointment with her will include the general neuro exam since all we did was talk during the first appointment.

    Could this be the end of it all?!?!? I sure hope so.

    Well, there it is.

    My walking continues to get worse, but with smart planning I can still [usually] get through my day ok. Lots of breaks and rest. Sometimes though I do have to rest pretty much all day. I try to get up and do something every hour or two, but sometimes that is too much. My son is fixing up a house for me that should be ready in a few months. Everything in it will pretty much be new, and will be set up just for me. I'm excited! We're all hoping it will make my life more peaceful. Though I am in my own place right now, it is still what we call "grand central station" - a hub of activity from my family that live on the same property. People come in on a whim, which usually interrupts the flow of my day and confuses me.

    I'll be moving to a whole new property where my youngest will be living, but our houses will be a good distance apart (I won't even be able to see his house from my house). My house will no longer be the center of activity, and my day will be much quieter. We all think a season of quiet will be really good for me. I used to be so social and love to host meals. I miss that, but oh well. That's just how life goes ... go with the flow, right?!

    That's all for now I guess. Thanks for your encouragement over the years! Hopefully soon I'll be out of limbo.

    Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
    Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
    EDSS of 5.5, sometimes 6.0

    #2
    Welcome back, jjs! We missed you!

    I know you've been through a lot trying to get a dx, and now hopefully, something is just waiting around the corner for you. Of course, I'm never thrilled to hear that MS is anyone's diagnose but I'm so happy you found a good neuro who listened to you and made suggestions. Yay!

    And wonderful news about your upcoming move to a new house. Hopefully, this will be just what you need to stay centered and give yourself some peaceful space. Being around family is wonderful, but it can be overwhelming at times. There are 19 of us when we all get together

    Let us know what you find out in a few weeks and good luck!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Hi jjs.

      Glad you came back with an update

      She said most of my symptoms would show activity in my spine, not my brain, so why has no one ordered an updated scan
      Your new Neurologist is correct. I was not aware that no one bothered to do follow-up MRIs on the spine. Will keep my fingers crossed this Dr. and testing can finally give you answers. 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

      Comment


        #4
        Originally posted by jjs View Post
        She said she was going to get to the bottom of this once and for all. If it's MS, let's get it diagnosed. If it's not MS, let's figure it out and get that diagnosed. She told me to set up the neck and spine MRI for 2 weeks, and then set up an appointment with her right afterward. So, on the 14th I go in for the scans and then see her right after the scans at 11:30. That appointment with her will include the general neuro exam since all we did was talk during the first appointment.
        Hi jjs

        So very, very glad for you that you are in the care of an MS Specialist, Dr. Green, who really listens to you.

        You deserve the best, after all that you have been going through.

        Good luck and please keep us posted!

        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


          #5
          Glad to see you again! It's been quiet around here. MS is so complicated and can stir up your life, especially when you are trying to get diagnosed. It helps when you have confidence in your doctor. Sounds like you're on the road to a new kind of life with lots of help.

          After 18 years I am finally in remission. My doctor almost feels like my MS has "burned out" but he doesn't like that term. So you see, anything can happen. Keep positive and keep talking to us. Love you!
          Marti




          The only cure for insomnia is to get more sleep.

          Comment


            #6
            Originally posted by jjs View Post
            For those who have been conversing with me over the years (a few that come to mind: mamabug, marti, koko, julesa, seasha, and more ... I might have spelled some of those wrong), here's an update.

            You probably know me well enough by now to know that I disappear for a while, so I'm sorry if I missed anything that you've said to me!! Mamabug - your exercise check in comes to mind! I just got so overwhelmed last fall. Last september I DID go to the appointment with the resident neuro that was overseen by the head neuro that was/is an MS specialist, and that was the first MS specialist I've been able to see [I live 3 hours or more away from any MS specialist]. I left there SO DISCOURAGED by how I was treated [they were both very nice, but that's not the issue]. It just seemed like the resident neuro was really excited about getting to the bottom of my issues, but then the head guy came in and shot everything down. Instead of getting updated MRI scans like the resident neuro suggested, he said I needed some small fiber nerve test (the name escapes me). He also did some blood work for things like sjogren's and a few more autoimmune diseases that can show up in bloodwork. I looked everything up when I got back to the van (my friend drove me) and I literally fit NONE of them ... maybe I had one symptom from each, but it just proved to me that he did not listen to a word I said.

            To add insult to injury, he set the next appointment for 4 months. In my mind I'm thinking, "4 months! That's 1/3 of a year away!" Geesh. I already have anxiety about going ... and 4 months makes it easy to talk myself out of going.

            I was so stressed out, frustrated, anxious, discouraged, etc. All the tests came back negative (no surprise there), and I opted out of the follow up appointment. I just couldn't do it; it didn't "feel right" to me.

            In the meantime, I was finally approved for medicaid for disabled people. My GP gave me a referral to an MS center in St. Louis - Dr Green [MS Specialist].

            My appointment with Dr Green was last week. This time instead of crying for frustration and discouragement, I cried for thankfulness. I have NEVER so far in this journey had a doctor that understood everything I was saying and going through, and in fact she could explain it better than me. She was shocked at how no one has gotten to the bottom of my problems. I reminded her that it's partially my fault for getting frustrated over and over again and giving up for years at a time before trying again. She felt like my frustration was justified because of all the feet-dragging and brick walls.

            She was also shocked that I have only had one scan of my neck and spine, and it was over 6 years ago. She said most of my symptoms would show activity in my spine, not my brain, so why has no one ordered an updated scan?!?!?! She actually seemed upset about it.

            I could understand her, she was thorough, and I liked her personality. I felt at ease with her, which really helped my issues with confusion and anxiety around doctors. Of course my friend was with me too - I always bring him so he can remember what was said and help add to the conversation. He liked her just as much as I did.

            She said she was going to get to the bottom of this once and for all. If it's MS, let's get it diagnosed. If it's not MS, let's figure it out and get that diagnosed. She told me to set up the neck and spine MRI for 2 weeks, and then set up an appointment with her right afterward. So, on the 14th I go in for the scans and then see her right after the scans at 11:30. That appointment with her will include the general neuro exam since all we did was talk during the first appointment.

            Could this be the end of it all?!?!? I sure hope so.

            Well, there it is.

            My walking continues to get worse, but with smart planning I can still [usually] get through my day ok. Lots of breaks and rest. Sometimes though I do have to rest pretty much all day. I try to get up and do something every hour or two, but sometimes that is too much. My son is fixing up a house for me that should be ready in a few months. Everything in it will pretty much be new, and will be set up just for me. I'm excited! We're all hoping it will make my life more peaceful. Though I am in my own place right now, it is still what we call "grand central station" - a hub of activity from my family that live on the same property. People come in on a whim, which usually interrupts the flow of my day and confuses me.

            I'll be moving to a whole new property where my youngest will be living, but our houses will be a good distance apart (I won't even be able to see his house from my house). My house will no longer be the center of activity, and my day will be much quieter. We all think a season of quiet will be really good for me. I used to be so social and love to host meals. I miss that, but oh well. That's just how life goes ... go with the flow, right?!

            That's all for now I guess. Thanks for your encouragement over the years! Hopefully soon I'll be out of limbo.

            I had forgotten how close in miles we are. I am still in Marshfield, but have never had the energy to drive to St. Louis to see a specialist. It was suggested, but I just never got to it. My neuro is in Springfield and he is very good. My son loves him! Like you, I take someone with me to all appointments.
            Marti




            The only cure for insomnia is to get more sleep.

            Comment


              #7
              Hi jjs!
              Great to see you posting again and especially with such good news after all the struggles. Your new neurologist sounds like an excellent fit and a new house with plenty of privacy sounds wonderful and much deserved. Please don't be a stranger.
              Jules
              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
              Anonymous

              Comment


                #8
                Welcome back, jjs!

                I'm so sorry 💔 for the long journey to dx, but glad that things are looking up with your MS specialist.

                Unfortunately, many if us experience a decline in mobility. I hope things stabilize for you, and that your move adds the peace to your life that you hope for.
                ~ 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


                  #9
                  Welcome back jjs! I too sometimes go away for a bit but usually because life, kids, family consume me. This group of folks has helped me for the past decade and I too am grateful for everyone on here at MW World!

                  Comment


                    #10
                    Welcome back jjs.

                    I am so glad you are in the hands of a neuro who is empathetic and wants to get you answers one way or another. I know it's been a long ride. Here is hopening you find the answers soon.

                    On a side note, it always infuriates me when I hear doctors ignore the spine when ordering MRIs, especially when someone presents with symptoms that may be related to the spine.

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

                    Comment


                      #11
                      My response did not post ... maybe I got too personal?! The point: Thank you all so much! I'm so thankful for this site. I'll let you all know how next week goes ... unless I get frustrated and disappear for another long stretch!

                      Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                      Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                      EDSS of 5.5, sometimes 6.0

                      Comment


                        #12
                        My appointments ...

                        I'm recovering from my appointments during the past week. I do not have the results from the 2 MRIs yet but in effort to keep this short, here's the short end of it all:

                        The MS Specialist thinks I have PPMS, which does not surprise me at all. I meet the first part of the diagnosis criteria, so if the MRIs show spots, then I'll be diagnosed with PPMS. If they do not show spots, then I will be scheduled for a LP. If that comes back abnormal, then I'll be diagnosed with PPMS. If it comes back normal, the neuro said we'll just have to wait.

                        She also said it's very normal for some PPMS patients to not have spots for several years, and my course is not surprising.

                        During the appointment she was again surprised at the lack of care the former neuros were giving me. Like never watching me walk down the hall and back, or never poking me in corresponding places with a needle.

                        If I get officially diagnosed, she wants me to start on ocrevus asap. Honestly, that freaks me out. I have been researching it an am not impressed. I just do not think it's for me. But, we'll cross that bridge if/when we get there. I might start lurking the ocrevus threads and ask questions.

                        Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                        Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                        EDSS of 5.5, sometimes 6.0

                        Comment


                          #13
                          Originally posted by jjs View Post
                          I'm recovering from my appointments during the past week. I do not have the results from the 2 MRIs yet but in effort to keep this short, here's the short end of it all:

                          The MS Specialist thinks I have PPMS, which does not surprise me at all. I meet the first part of the diagnosis criteria, so if the MRIs show spots, then I'll be diagnosed with PPMS. If they do not show spots, then I will be scheduled for a LP. If that comes back abnormal, then I'll be diagnosed with PPMS. If it comes back normal, the neuro said we'll just have to wait.

                          She also said it's very normal for some PPMS patients to not have spots for several years, and my course is not surprising.

                          During the appointment she was again surprised at the lack of care the former neuros were giving me. Like never watching me walk down the hall and back, or never poking me in corresponding places with a needle.

                          If I get officially diagnosed, she wants me to start on ocrevus asap. Honestly, that freaks me out. I have been researching it an am not impressed. I just do not think it's for me. But, we'll cross that bridge if/when we get there. I might start lurking the ocrevus threads and ask questions.
                          Hi jjs

                          Thanks for the update.

                          Originally posted by jjs View Post
                          During the appointment she was again surprised at the lack of care the former neuros were giving me. Like never watching me walk down the hall and back, or never poking me in corresponding places with a needle.
                          From reading your posts, I could never understand it either.

                          So glad and relieved for you, that you are now receiving proper attention and care.

                          Keep us informed, as we are with you all the way.

                          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

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