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    I'm willing to lay it all on MS

    My neuro believes that my MS has "burned itself out", but that the damage has been done. I thought I had finally reached a remission, but that seems to be not true again. This disease is so confusing.

    I've gotten to the point that I want to blame every pain, all the unsteadiness, eye stuff, breathing stuff, fatigue, weakness, dizzy moments, insomnia, stomach issues, allergies, absolutely everything on good old MS. I am tired of doctors and have found all kinds of excuses to NOT go for office visits. I'm constantly cancelling appts.

    I'll be 70 years old soon and I know some things are just plain aging. So.. why chase it all down over and over?

    I guess I don't really have a question here. Just wondering if anyone else does this blaming MS for everything?? It's actually easier to live with all of it that way. I'm not depressed guys. I've never asked "why me" or played the "poor me" card. I was relieved to have a diagnosis. Happy to have a place to file all the symptoms.

    I guess that's it. Thanks for listening.
    Marti




    The only cure for insomnia is to get more sleep.

    #2
    Me Too

    I absolutely understand! I blame everything on MS. Dizziness certainly is and bad balance but stomach problems, insomnia, and on an on ??? I have a whole array of issues and I too am sick of doctors so now I just say it's probably MS. Once in awhile though, I get concerned that something else is really wrong and wonder if I am harming myself by not getting to the bottom of it. For me it is quite a dilemma.

    Comment


      #3
      Oh yeah, I am with you on this! So many things pop up randomly, MS related? Could be, likely is and not worth trying to find the right Dr. who will do lots of tests and then say, "eh, it could be MS"! I am in this position now with pain and tingling/numbness in my left foot. I already know I have plantar fasciitis and an Achilles tendon problem along with bad drop foot (especially when fatigued!) but the pain and tingling are new, the neuro will likely say check with your GP, the GP will say see the podiatrist, the podiatrist is only doing phone consults except for emergencies still. So is it worth trying to figure this out? Nah, it's my MS!

      Comment


        #4
        Originally posted by loopey View Post
        I absolutely understand! I blame everything on MS. Dizziness certainly is and bad balance but stomach problems, insomnia, and on an on ??? I have a whole array of issues and I too am sick of doctors so now I just say it's probably MS. Once in awhile though, I get concerned that something else is really wrong and wonder if I am harming myself by not getting to the bottom of it. For me it is quite a dilemma.
        Loopey Girl!! So nice to hear from you. I half expected you would have some insight on this thread. You and I are so much alike. I do worry about some of the pains and the dizzies, but ultimately I talk myself out of seeing a doctor and into the MS web. Hope you are staying free of Covid over there. I have lost almost all my Italian family here to old age. I still have over 60 cousins, but all the aunts and uncles are gone. One uncle had MS for years. Anyway, be well my friend. Thank you.
        Marti




        The only cure for insomnia is to get more sleep.

        Comment


          #5
          Originally posted by MS TOO View Post
          Oh yeah, I am with you on this! So many things pop up randomly, MS related? Could be, likely is and not worth trying to find the right Dr. who will do lots of tests and then say, "eh, it could be MS"! I am in this position now with pain and tingling/numbness in my left foot. I already know I have plantar fasciitis and an Achilles tendon problem along with bad drop foot (especially when fatigued!) but the pain and tingling are new, the neuro will likely say check with your GP, the GP will say see the podiatrist, the podiatrist is only doing phone consults except for emergencies still. So is it worth trying to figure this out? Nah, it's my MS!

          MS TOO.. nice to meet you. I have stopped playing the doctor wheel. One sends you to a specialist and the specialist says "see your primary". So I am accepting everything as MS and moving on. I've had tingling in my left foot for years. It usually shows itself when there are some other symptoms kicking up. Do the best you can and stay well!
          Marti




          The only cure for insomnia is to get more sleep.

          Comment


            #6
            Many times prior to a diagnosis people and physicians are confused by our varied, and often intermittent, symptoms. Symptoms are often lumped together and "stress, anxiety or depression" is blamed.

            The exact opposite tends to happen after a diagnosis where MS tends to be the "catch all" for symptoms without thorough medical examination. Many times these symptoms are related to MS, but frequently the actual cause is missed due to lazy medical providers.

            I do understand where you are though. I'm tired of medical appointments and procedures. I'm tired of having to explain why MS isn't the cause of my, or their, current concern.

            Here's a recent example
            I'm on rituximab and after infusions my WBC is reduced, that's the ENTIRE point of the treatment. My PCP ordered blood work shortly after my infusion. Of course, my WBC count was low and my PCP got overly concerned and wanted me to immediately get retested. *sigh* You can't make this stuff up. Even after I explained how my medication worked they wanted to closely monitor my WBC count. Completely unnecessary stress...

            Most of us have lived long enough to know there are times and seasons to life. Your thoughts are common to most people with chronic illness. Your feelings are normal so no need to concern yourself about them. In fact, I believe you articulated what many of us feel and think quite well.

            Just remember there are some symptoms worthy of pursuing answers to and only you can determine when that threshold has been met.

            Thank you for your message and I wish you well.

            Comment


              #7
              Originally posted by Marco View Post
              Many times prior to a diagnosis people and physicians are confused by our varied, and often intermittent, symptoms. Symptoms are often lumped together and "stress, anxiety or depression" is blamed.

              The exact opposite tends to happen after a diagnosis where MS tends to be the "catch all" for symptoms without thorough medical examination. Many times these symptoms are related to MS, but frequently the actual cause is missed due to lazy medical providers.

              I do understand where you are though. I'm tired of medical appointments and procedures. I'm tired of having to explain why MS isn't the cause of my, or their, current concern.

              Here's a recent example
              I'm on rituximab and after infusions my WBC is reduced, that's the ENTIRE point of the treatment. My PCP ordered blood work shortly after my infusion. Of course, my WBC count was low and my PCP got overly concerned and wanted me to immediately get retested. *sigh* You can't make this stuff up. Even after I explained how my medication worked they wanted to closely monitor my WBC count. Completely unnecessary stress...

              Most of us have lived long enough to know there are times and seasons to life. Your thoughts are common to most people with chronic illness. Your feelings are normal so no need to concern yourself about them. In fact, I believe you articulated what many of us feel and think quite well.

              Just remember there are some symptoms worthy of pursuing answers to and only you can determine when that threshold has been met.

              Thank you for your message and I wish you well.

              Marco, thanks for understanding. I'm sorry you are riding the medical merry go round. It's so frustrating. I watch for anything that seems wildly unusual. Wearing my mask and keeping my distance. Be well!
              Marti




              The only cure for insomnia is to get more sleep.

              Comment


                #8
                Me Too

                Me too
                I blame my MS for everything and anything wrong
                Pain stiffness watery eyes, plugged ear, burning skin , weird sensation , digest problem , Strange powdery creamy mouth, chest pain , voice change and you name it , many more things

                I know how nasty MS is and all could be symptom of MS

                I don’t even bother to go see Dr because when patient has chronic disease like MS, it makes Other diagnosis very hard and usually they end up with the same statement “ could be because of MS or side effect of medications” 😡😡

                Comment


                  #9
                  Originally posted by brave View Post
                  Me too
                  I blame my MS for everything and anything wrong
                  Pain stiffness watery eyes, plugged ear, burning skin , weird sensation , digest problem , Strange powdery creamy mouth, chest pain , voice change and you name it , many more things

                  I know how nasty MS is and all could be symptom of MS

                  I don’t even bother to go see Dr because when patient has chronic disease like MS, it makes Other diagnosis very hard and usually they end up with the same statement “ could be because of MS or side effect of medications” 😡😡


                  I understand and agree for the most part. But some of your symptoms are worrying me. At least let your doctor take a look and then see if it's all a MS thing. Not sure how long you have been riding the MS train, but if you are new to MS... check things out before dismissing them.
                  Marti




                  The only cure for insomnia is to get more sleep.

                  Comment


                    #10
                    Now I Have a New One!

                    Now that we live in the time of Covid19 I get concerned that I have it when I get new symptoms. The other day I felt extra dizzy and light headed with a sore throat and thought it was MS then I thought "what if it's the virus?!" I was better the next day and sometimes feel silly for blaming everything on MS or now MAYBE the virus.

                    We are doing very well in Italy. People are still being cautious but it is more like normal now. I have been to see my son several times in the past 3 weeks and even went to the lake to feed the swans.

                    Take care Marti. I always like to hear from you!

                    Comment


                      #11
                      Originally posted by loopey View Post
                      Now that we live in the time of Covid19 I get concerned that I have it when I get new symptoms. The other day I felt extra dizzy and light headed with a sore throat and thought it was MS then I thought "what if it's the virus?!" I was better the next day and sometimes feel silly for blaming everything on MS or now MAYBE the virus.

                      We are doing very well in Italy. People are still being cautious but it is more like normal now. I have been to see my son several times in the past 3 weeks and even went to the lake to feed the swans.

                      Take care Marti. I always like to hear from you!

                      Marti




                      The only cure for insomnia is to get more sleep.

                      Comment


                        #12
                        Originally posted by marti View Post
                        ....
                        I'll be 70 years old soon and I know some things are just plain aging. ...
                        I don't reply much around here, but I do follow a lot of the topics.

                        Marti, I was dx'd in 1998, and was on Copaxone/Glatopa for about 20 years or so. (I'm 68 now) My RR/MS gradually drifted in to mostly remission, and last year my neuro and I agreed to let me discontinue my daily shots. (ahhh)
                        I, too still have the occasional fatigue meltdown, and residual disability from the early years when I had many bad relapses, but all things considered I can blame a lot of my falling apart on aging.

                        I am so grateful to have had great medical coverage all these years (yeah for Union Membership) and the opportunity to be treated with the best drugs they had at the time. I stayed on Copax, because I was mostly stable, and even went back to work for 11 of those years, retiring finally at 64 years old.

                        Sure, I have had my share of issues along the way. Like a herpes infection in my right eye that nearly blinded me, a couple of years with dreadful digestive problems, but considering how"lucky".

                        The hardest part of aging? Staying in shape physically, as the years go by, I find it harder and harder to be motivated to work out, eat right and stay off my favorite vices.

                        Thanks for your great post!
                        Jim S.

                        Comment


                          #13
                          Originally posted by jstinnett View Post
                          I don't reply much around here, but I do follow a lot of the topics.
                          Welcome back, Jim. I'm glad you read us even though you don't post frequently. Feel free to chime in with your experiences or questions more often!
                          ~ 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


                            #14
                            Originally posted by jstinnett View Post
                            I don't reply much around here, but I do follow a lot of the topics.

                            Marti, I was dx'd in 1998, and was on Copaxone/Glatopa for about 20 years or so. (I'm 68 now) My RR/MS gradually drifted in to mostly remission, and last year my neuro and I agreed to let me discontinue my daily shots. (ahhh)
                            I, too still have the occasional fatigue meltdown, and residual disability from the early years when I had many bad relapses, but all things considered I can blame a lot of my falling apart on aging.

                            I am so grateful to have had great medical coverage all these years (yeah for Union Membership) and the opportunity to be treated with the best drugs they had at the time. I stayed on Copax, because I was mostly stable, and even went back to work for 11 of those years, retiring finally at 64 years old.

                            Sure, I have had my share of issues along the way. Like a herpes infection in my right eye that nearly blinded me, a couple of years with dreadful digestive problems, but considering how"lucky".

                            The hardest part of aging? Staying in shape physically, as the years go by, I find it harder and harder to be motivated to work out, eat right and stay off my favorite vices.

                            Thanks for your great post!

                            Thanks for your great and candid response. I know some of my current "stuff" is related to aging, although I don't feel like I'm aging. But you are so right.. it's hard to get motivated to move and even harder to move when everything hurts or wears me out. I used to exercise regularly. Even dancing was exercise.

                            I took Copaxone until it started playing with me. I began getting weird side effects so I gradually cut back and then the neuro agreed that it was time to stop.

                            Glad to hear your story and your successes. Thanks.
                            Marti




                            The only cure for insomnia is to get more sleep.

                            Comment


                              #15
                              When I was first diagnosed my PCP sat me down and told me to expect everything to be blamed on MS.

                              You said it really well. Does it matter when there is nothing you can do about it? No use trying put everything in our bodies into compartmentalized boxes. Everything works together. It’s weird to think of already being close to 70 but I’m getting close, too.

                              Comment

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