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    Don't know how to do this

    hi i was dx. in 2000. It started with my eyes. so it got better. Than about 1 year after that I really started feeling bad again so my mom took me to see my PCP. Since my brother was DX. with MS my PCP set me up for a MRI. later that day my PCP called me to tell me that I had MS. Since that I feel like everything started for me. Now I just fell like my MS has taken over my life. I really don't know what to do anymore. Please let me know what to do.....

    #2
    Sorry but I dont have any answers for you. I take life one day at a time while keeping in mind that the things I do today have a direct impact on tomorrow. Best of luck.
    The future depends on what you do today.- Gandhi

    Comment


      #3
      Originally posted by diguilio View Post
      Now I just fell like my MS has taken over my life. I really don't know what to do anymore. Please let me know what to do.....
      Hi diguilio ~

      I try to live one day at a time also, as Boudreaux mentioned.

      It's difficult to give feedback, not knowing your current abilities such as: are you able to walk or take steps? do you care for yourself, or have a caregiver? etc.

      If you let us know what your current day to day life is like, we may be able to help by sharing our own experiences that are similar.

      Hope to hear more from you diguilio.

      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


        #4
        my day

        okay....my day is i get up every morning....i eat my breakfast at me desk i live at home with mom and dad....i have MS for a over 10 years......and for me I think it is just getting worse

        Comment


          #5
          Originally posted by diguilio View Post
          okay....my day is i get up every morning....i eat my breakfast at me desk i live at home with mom and dad....i have MS for a over 10 years......and for me I think it is just getting worse
          diguilio ~ If you don't mind sharing, what would you say are the worst things about MS that you are dealing with?

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

          Comment


            #6
            Hello diguilio,

            I am sorry to hear of your struggles with this disease. I was officially diagnosed 13 years ago and my Dr. suspected I may have had MS 8 years earlier. I believe I had MS way earlier given the physical issues I had. Now I am secondary progressive, have to have a brace on one foot and walk slowly with a cane. My balance is terrible, I have bad muscle cramps and spasticity and lucky me, two other autoimmune issues, hyperthyroidism and lymphocytic colitis along with other ailments that old guys get.

            While it may sound cliche, I live by the motto I may have MS but MS doesn't have me. I try to stay positive even on days when I am not doing well. On those days when I am very clumsy and have difficulty moving, I still try and do something around the house even if it is only for 10 minutes. I still enjoy working in the yard or working on my old truck so I will work on something for a few minutes and tend to push myself and when I notice my foot is dragging and I am losing my balance it is back to my chair where I sit and watch TV with my cat purring on my lap.

            My cat Missy Moo is my therapy cat. I got her just a few months after I was diagnosed and she really is calming, unless she wants to go outside at 4:30 in the morning!

            So while I don't know much about your situation and what you are dealing with, I can only offer advice on what has worked for me. Having an activity that you enjoy, even if it is only for a few minutes at a time, is helpful as I think it allows you to focus on something other than this nasty disease. My therapy cat has also been a big help as she is entertaining and seems to know my moods and when I am not doing well she climbs on my lap and starts purring and takes a nap which is calming for me.

            As others have said, one day at a time, that's all any of us can do. I hope you are able to find a distraction from MS. For me, having a distraction such as working in my garden or on my old truck, allows me to think about something else other than my medical issues.

            Please feel free to check back in and if you are up to providing more specific information on what you are dealing with, there are many folks here that can provide some good advice.

            Take care!

            Comment


              #7
              Originally posted by MS TOO View Post
              I am sorry to hear of your struggles with this disease. I was officially diagnosed 13 years ago and my Dr. suspected I may have had MS 8 years earlier. I believe I had MS way earlier given the physical issues I had. Now I am secondary progressive, have to have a brace on one foot and walk slowly with a cane. My balance is terrible, I have bad muscle cramps and spasticity and lucky me, two other autoimmune issues, hyperthyroidism and lymphocytic colitis along with other ailments that old guys get.

              While it may sound cliche, I live by the motto I may have MS but MS doesn't have me. I try to stay positive even on days when I am not doing well. On those days when I am very clumsy and have difficulty moving, I still try and do something around the house even if it is only for 10 minutes. I still enjoy working in the yard or working on my old truck so I will work on something for a few minutes and tend to push myself and when I notice my foot is dragging and I am losing my balance it is back to my chair where I sit and watch TV with my cat purring on my lap.

              My cat Missy Moo is my therapy cat. I got her just a few months after I was diagnosed and she really is calming, unless she wants to go outside at 4:30 in the morning!

              So while I don't know much about your situation and what you are dealing with, I can only offer advice on what has worked for me. Having an activity that you enjoy, even if it is only for a few minutes at a time, is helpful as I think it allows you to focus on something other than this nasty disease. My therapy cat has also been a big help as she is entertaining and seems to know my moods and when I am not doing well she climbs on my lap and starts purring and takes a nap which is calming for me.

              As others have said, one day at a time, that's all any of us can do. I hope you are able to find a distraction from MS. For me, having a distraction such as working in my garden or on my old truck, allows me to think about something else other than my medical issues.

              Please feel free to check back in and if you are up to providing more specific information on what you are dealing with, there are many folks here that can provide some good advice.
              Thank you MS TOO! Great sharing.
              PPMS for 26 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #8
                MS can certainly contribute to us feeling discouraged, and Disguilio, it sounds like discouragement is where you are right now.

                MS Too gave you some good advice. Find activities you enjoy. Having a pet works for MS Too; if you're not a animal person (and, even if you are), also find people who can give you that same kind of unconditional love that a pet can provide.

                Some of my standard advice is to take care of yourself. Pamper yourself sometimes. That goes along with finding activities you enjoy, but also just stop to de-stress. Consider deep breathing, mindfulness, meditation, yoga, etc. Get some exercise, but listen to your body and don't over-do it. Eat a healthy diet; decrease processed foods, etc. Consider looking into an MS diet such as The Wahls Protocol.

                And; yeah. Take one day at a time.
                ~ 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
                  Hi Diguilio,

                  I too am sorry to hear of your struggles. You've received lots of good advice as to how to manage MS emotionally, but maybe that's not your only struggle?

                  Are you finding that the physical toll of MS is getting to you?

                  I so, ask your doctor to give you a referral for physical therapist or an occupational therapist visits. They can help you receive optimum results by either giving you exercises and tips for improving your quality of life which in turn can help your mental state. Plus it helps get you out of your house!

                  It's hard to know what is really going on with you with so little information you've given us. Regardless, please take care and let us know how we can help you more
                  1st sx '89 Dx '99 w/RRMS - SP since 2010
                  Administrator Message Boards/Moderator

                  Comment


                    #10
                    Sorry to hear you are feeling this way. Have you had any recent changes in abilities or symptoms? Any relationship dynamic changes with your parents? Or just a general feeling of trying to live with MS?

                    Even without other changes, I think MS sometimes just wears us down emotionally. It can sometimes be cyclical in nature, even varying with seasons. I struggle in the winter more, affected by SAD. But since I know this, I try to get ahead of it, using light therapy. Any chance winter is affecting you?

                    Do you talk to anyone when you are feeling overwhelmed by MS? Here is a great place to do that. Sometimes therapy can help too. It can be a safe place to get fears out and help with coping skills. Have you ever used one?

                    Please let us know how you are doing and what's going on.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #11
                      more information

                      hi everyone....so now I would love to know with everything going on with me now another question i am having a lot of problem with my bowels i am moving my bowels i am dealing with a lot of consipation and i don't know if this common....edonnb

                      Comment


                        #12
                        Originally posted by diguilio View Post
                        another question i am having a lot of problem with my bowels i am moving my bowels i am dealing with a lot of consipation and i don't know if this common....
                        Constipation, loss of control of the bowels, and diarrhea are among the bowel problems that can occur in MS. Causes of constipation include:

                        -Insufficient fluid intake

                        -Reduced physical activity and mobility

                        -Decreased or slowed “motility” (movement of food through the intestinal tract)

                        -Side effects of certain medications

                        Loss of bowel control in MS could be neurologic in origin (or related to constipation) and should be evaluated by your MS provider.

                        Bowel regularity

                        A healthcare provider can help establish an effective bowel management program. Occasionally, it might be necessary to consult a gastroenterologist, a physician specializing in the stomach and bowel.

                        Bowel regularity generally can be maintained by following a few simple suggestions:

                        -Drink adequate amounts of fluids — at least 48 ounces (6 to 8 glasses) of fluids daily.

                        -Include plenty of fiber in your diet. Fiber can be obtained from fresh fruits and vegetables, whole grain breads and cereals, and dietary additives such as powdered psyllium preparations.

                        -Get some physical activity. It helps keep things moving.

                        -Establish a regular time and schedule for emptying the bowels (bowel training/retraining).

                        Discuss remedies such as stool softeners, bulk forming supplements, enemas, suppositories or manual stimulation with your healthcare provider. It may take several weeks to know if these remedies are working. Continuous or regular use of laxatives is generally not recommended.
                        https://www.nationalmssociety.org/Sy...Bowel-Problems

                        You'll find also this discussed in the The Secretive and Confidential Room:
                        https://www.msworld.org/forum/forumd...l-Symptom-Room

                        Here are some threads about constipation:

                        https://www.msworld.org/forum/showth...2-Constipation!

                        https://www.msworld.org/forum/showth...2-Constipation

                        https://msworld.org/forum/showthread...on-please-help!!

                        Best wishes
                        Kimba

                        “When you change the way you look at things, the things you look at change.” ― Max Planck

                        Comment


                          #13
                          This is very helpful information, describing the causes and various remedies for bowel issues related to MS.

                          Thank you Kimba!

                          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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