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    #16
    I was dx in 2004, I had my first sx late 1970's. I had already started to progress by the time I was dx. The first thing I changed was to get closer to God. A few months later left my job and started working part time at home and finally gave it up altogether.
    God Bless Us All

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      #17
      It is good to read others stories as we have similar but different experiences.

      I was diagnosed in 2009 at 47 years old. At the time I had just returned to working outside our home after spending time full time with my two young daughters. Part of my symptoms were depression and anxiety, which I didn’t understand then to be so related to MS. My symptoms were: foot drop and falling/tripping, weight loss, stomach pain and bowel issues, fatigued, body pain, numbness and pain, weakness in left leg. I had recently changed to a new primary care doc because my other doctor downplayed my issues and basically told me I needed to be a tougher and stronger mother. My new doctor jumped right on it and I was diagnosed within two months of going in with many issues. (She is a rock star and continues to be my primary physician).

      To be honest, it really took me a good couple of years (maybe about 3) to cope with the diagnosis as I was working with 2 young children and husband that traveled a lot for work. At that time, I was still determined “to do it all.”

      The blessing in the diagnosis, like for many, was that all the strange symptoms and issues for over a decade or more prior, finally were answered. I wasn’t actually crazy!!! And boy, that was such a relief!!!

      It now seems to me that I have too much body awareness and struggle to push symptoms off to the side. Without the distraction of my job/career, I am also working on living in the present and not thinking about all my various health issues and what that means for my future. It is really hard to do...especially since my girls are still teens. More than anything I want to be as healthy as possible to help them grow up to be strong, confident and independent young women.

      Last spring I had a flare resulting in my first dose of IVSM. Unfortunately since then, I have been really struggling and it is coming up on a year. This disease has humbled me as I had to leave my career that I absolutely loved and focus all my time and energy in getting back to a better state physically. The loss of my work identity, the loss of physical abilities and also the isolation of being home by myself more now, added in with a few new health issues, has made this year a tough transition for me. It seems like I am learning to cope with MS a new, all over again.

      My family has been a source of true support. My husband and daughters are ALWAYS supportive and there for me. My girls were 8 and 6 years old when I was diagnosed, so basically this is all they really know. Although at times I feel I have let them down in many ways, they continue to assure me that I haven’t. I remain hopeful that my MS will not progress much and that a really good next decade lies ahead. 😊

      This group here at MS World has been with me from the start, back ten years ago. I wouldn’t have made it through so many difficult times over all these years without the support of all of you here on this message board. Thank you all!! 💕💕

      Comment


        #18
        I was diagnosed on my 46th birthday

        I had just got home from a really nice vacation to Mexico with my Sister (who is now deceased). It was wonderful! When I walked into my apartment, I felt this wave go over my entire body. I immediately went totally blind on my left side and could not feel my feet. I thought I was having a stroke! I thought I would feel better if I just went and laid down. The following morning I got up to go to work, still blind and still could feel my feet. I called my doctor and she sent me in for an MRI. About three days after the MRI, I received a call from my doctor asking me to come to her office.

        The following day I left work and went to see my doctor and that's when she told me I had MS. I had no idea was MS was! After the appointment I went and bought every book I could find about MS so I would know what I was up against. That was on my 46th birthday! (I am 60 now.) Since I was diagnosed my entire life has changed. I had to move because I lived in an upstairs unit, I was laid off as soon as upper management found out I has been diagnosed, my boyfriend dumped me and life as I knew it wa over! At first my family was supportive. That lasted about two weeks! That still is very difficult for me! However, since then I have became and Ambassador for the MS Foundation and try to help as many people as I can!

        Comment


          #19
          Big changes due to MS DX

          I was diagnosed in 2009, but had many symptoms going back to the 1970's. I was born in 1950 and retired in 2006, so many of our retirement decisions needed modification. We had moved from Seattle, WA to Fredericksburg, TX and bought our 'retirement home' in 2008. We were thinking how nice it would be to live in a warm, dry climate and we also have a son with his wife a 3 grandkids in Austin (about 80 mi away).

          I started having chest pain in late 2008 and ultimately had to have my aortic valve replaced. Then during a routine physical I noticed that the doc's stethoscope felt cold on one side of my chest but not on the other. Her response was classic, "well, that's weird!". But she (and she's still my PCP) personally escorted me to a neuro in the same practice who, after some questions sent me to an MS neuro in San Antonio. After more testing and questioning and examining, I was diagnosed RRMS within a few months. I am now seeing a different MS neuro in San Antonio, who confirmed the DX.

          Now the 'warm dry' climate has turned into a nightmare in the summer. My depression became so bad that I was treated by ECT (electro-convulsive therapy). Remember Jack Nicholson in 'One Flew Over the Cuckoo's Nest'? Similar, but now they sedate you.

          So the bottom line is that the disease made some terrific changes in my life, nearly all negative. I continue to be treated for MS, depression (meds only!), Crohn's disease, arthritis, and asthma. Sadly, all of those can be mimicked by just the MS, so diagnoses are never simple.

          Fortunately I am still mobile and my son in Austin has purchased some acreage in the PNW and has given my wife and I one of the 2 houses on it, which will help with the TX summers. I love my wife and family but I have become of a bitter old man, and I truly hate it since I know that the people around me care for me and are willingly looking out for me.

          So the DX left me numb and confused. But the disease itself, among other health issues has caused me to forfeit many of the joys I anticipated in my retirement.

          I am presently SPMS and taking no DMD, but considering Ocrevus. I've tried Copaxone, Aubagio and Tecfidera.

          Roger

          Comment


            #20
            Hi, Roger. Where is PNW. I know a couple of people with MS who retired to the South. One doesn't seem bothered by it. The other is looking to move.

            My retirement is looking different than I thought it would. I thought it would be later, and I thought I would have more energy. I'm hoping that more exercise will help some with that.

            Your son is a great guy to give you the house.

            Do you stay indoors for the most part in the Summer?

            Originally posted by flangehead View Post
            I was diagnosed in 2009, but had many symptoms going back to the 1970's. I was born in 1950 and retired in 2006, so many of our retirement decisions needed modification. We had moved from Seattle, WA to Fredericksburg, TX and bought our 'retirement home' in 2008. We were thinking how nice it would be to live in a warm, dry climate and we also have a son with his wife a 3 grandkids in Austin (about 80 mi away).

            I started having chest pain in late 2008 and ultimately had to have my aortic valve replaced. Then during a routine physical I noticed that the doc's stethoscope felt cold on one side of my chest but not on the other. Her response was classic, "well, that's weird!". But she (and she's still my PCP) personally escorted me to a neuro in the same practice who, after some questions sent me to an MS neuro in San Antonio. After more testing and questioning and examining, I was diagnosed RRMS within a few months. I am now seeing a different MS neuro in San Antonio, who confirmed the DX.

            Now the 'warm dry' climate has turned into a nightmare in the summer. My depression became so bad that I was treated by ECT (electro-convulsive therapy). Remember Jack Nicholson in 'One Flew Over the Cuckoo's Nest'? Similar, but now they sedate you.

            So the bottom line is that the disease made some terrific changes in my life, nearly all negative. I continue to be treated for MS, depression (meds only!), Crohn's disease, arthritis, and asthma. Sadly, all of those can be mimicked by just the MS, so diagnoses are never simple.

            Fortunately I am still mobile and my son in Austin has purchased some acreage in the PNW and has given my wife and I one of the 2 houses on it, which will help with the TX summers. I love my wife and family but I have become of a bitter old man, and I truly hate it since I know that the people around me care for me and are willingly looking out for me.

            So the DX left me numb and confused. But the disease itself, among other health issues has caused me to forfeit many of the joys I anticipated in my retirement.

            I am presently SPMS and taking no DMD, but considering Ocrevus. I've tried Copaxone, Aubagio and Tecfidera.

            Roger

            Comment


              #21
              I love what you said about getting the diagnosis being good as confirmation that you weren't crazy -if not really a good thing. It's bad enough when regular people don't believe us. But when the docs think we're wimps...

              Hey, how about a new rule? Every doc who implies that someone with MS is a wimp gets to wear a MS sympathy suit (24/7) for a year. We get to design it. 😈😆





              Originally posted by MyGirlsMom View Post
              It is good to read others stories as we have similar but different experiences.

              I was diagnosed in 2009 at 47 years old. At the time I had just returned to working outside our home after spending time full time with my two young daughters. Part of my symptoms were depression and anxiety, which I didn’t understand then to be so related to MS. My symptoms were: foot drop and falling/tripping, weight loss, stomach pain and bowel issues, fatigued, body pain, numbness and pain, weakness in left leg. I had recently changed to a new primary care doc because my other doctor downplayed my issues and basically told me I needed to be a tougher and stronger mother. My new doctor jumped right on it and I was diagnosed within two months of going in with many issues. (She is a rock star and continues to be my primary physician).

              To be honest, it really took me a good couple of years (maybe about 3) to cope with the diagnosis as I was working with 2 young children and husband that traveled a lot for work. At that time, I was still determined “to do it all.”

              The blessing in the diagnosis, like for many, was that all the strange symptoms and issues for over a decade or more prior, finally were answered. I wasn’t actually crazy!!! And boy, that was such a relief!!!

              It now seems to me that I have too much body awareness and struggle to push symptoms off to the side. Without the distraction of my job/career, I am also working on living in the present and not thinking about all my various health issues and what that means for my future. It is really hard to do...especially since my girls are still teens. More than anything I want to be as healthy as possible to help them grow up to be strong, confident and independent young women.

              Last spring I had a flare resulting in my first dose of IVSM. Unfortunately since then, I have been really struggling and it is coming up on a year. This disease has humbled me as I had to leave my career that I absolutely loved and focus all my time and energy in getting back to a better state physically. The loss of my work identity, the loss of physical abilities and also the isolation of being home by myself more now, added in with a few new health issues, has made this year a tough transition for me. It seems like I am learning to cope with MS a new, all over again.

              My family has been a source of true support. My husband and daughters are ALWAYS supportive and there for me. My girls were 8 and 6 years old when I was diagnosed, so basically this is all they really know. Although at times I feel I have let them down in many ways, they continue to assure me that I haven’t. I remain hopeful that my MS will not progress much and that a really good next decade lies ahead. 😊

              This group here at MS World has been with me from the start, back ten years ago. I wouldn’t have made it through so many difficult times over all these years without the support of all of you here on this message board. Thank you all!! 💕💕

              Comment


                #22
                Speaking of crazy, in so many words my first Dr. said the same thing. He actually said I was having a nervous breakdown. That was 30 years ago this month. Nystagmus, sickening vertigo and some weird form of my vision scrolling vertically doesn't sound like having a nervous breakdown! Had many other weird things happen as the years went by, all misdiagnosed.

                10 years later, I was finally diagnosed after a bout of ON. I am one of those people, like MyGirlsMom, who was somewhat relieved to find out what was wrong with me. Since I didn't know a thing about MS and there wasn't much information in the library where I worked, I ordered as many books as I could. I also started the Swank diet and only stayed on it for 3 years because I missed eating more chocolate and a whole avocado if I wanted. I started on a exercise program of walking trails through mountains and valleys in the PNW (pacific northwest) I started swimming - mostly deep water walking. And starting taking a yoga class which I still attend.

                After 11 years on Avonex and then Copaxone, my MS progressed to the point where my neuro gave me permission to go off any DMT. SPMS was dx and it's been a very slow steady decline since then. I had to take early retirement 10 years ago. I like to think I've reached a plateau but it's hard to tell.

                I "celebrate" my 30 year anniversary this month and get lots of loving support from my husband, 5 adult children and 7 grandkids (with another one the way) We all laugh and joke often and that keeps my spirits up. The grandkids help me stay positive

                Eating well and growing an organic garden each year keeps me healthy.
                Being with others here on MSWorld keeps me from feeling lonely while living in a remote area. Thank you all for sharing!
                1st sx '89 Dx '99 w/RRMS - SP since 2010
                Administrator Message Boards/Moderator

                Comment


                  #23
                  Hi MMMMs

                  Sorry, I should have been more explicit in my whine!! PNW is the Pacific Northwest, generally thought of as Washington State and Oregon. I'm native to WA and spent many years in OR.

                  Yes, it is amazing how generous my family has been in the love and care they give me. When they did a major remodel of their house in Austin they made sure that there was a bedroom and bath on the ground floor so if it was ever necessary for us to live there with them we wouldn't have to climb stairs. They are that kind of very special and loving people.

                  The summers here in Central TX can be very warm, upwards of 100 deg F so I do spend a lot of my time in the house due to the MS. About 10 yrs ago I converted the attached 2 car garage into a sewing room for my wife and a studio for me. I use it for painting, carving, and a place to store my motorcycle (which hasn't been ridden in several years ).

                  BTW, I wasn't meaning to be negative about my PCP. I'm quite certain I wouldn't be alive if it weren't for her terrific diagnostic skills. She also discovered I had a heart murmur that ultimately led to a replacement aortic valve, and a second replacement 10 years later.

                  Comment


                    #24
                    Originally posted by flangehead View Post

                    Yes, it is amazing how generous my family has been in the love and care they give me. When they did a major remodel of their house in Austin they made sure that there was a bedroom and bath on the ground floor so if it was ever necessary for us to live there with them we wouldn't have to climb stairs. They are that kind of very special and loving people.
                    So heartwarming to read. I have to say, I am sure it is a reflection on how you raised your family and the love you gave. You showed the way. Even then, not every child shows selfless love to a parent, so I have to agree, very special indeed. Soak it up!
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #25
                      This is how my MS began.
                      https://msworld.org/creative-center/...f-in-the-night

                      Yes; I had to make changes right away.

                      I was off work for a few months (February, March, part of April 2002) while I worked on PT and OT. After going back, very part time, I had another MS flare. It was still undiagnosed, and presented with very different symptoms, but also ended up in the ER, followed by hospitalization. I lost my job, and was able to begin work again, finally, in September.
                      ~ 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


                        #26
                        Originally posted by Mamabug View Post
                        This is how my MS began.
                        https://msworld.org/creative-center/...f-in-the-night

                        Yes; I had to make changes right away.

                        I was off work for a few months (February, March, part of April 2002) while I worked on PT and OT. After going back, very part time, I had another MS flare. It was still undiagnosed, and presented with very different symptoms, but also ended up in the ER, followed by hospitalization. I lost my job, and was able to begin work again, finally, in September.
                        Thank you for writing your story Mamabug. I hope to read more as you continue working on your book!
                        All the best, ~G

                        Comment


                          #27
                          Originally posted by gargantua View Post
                          Thank you for writing your story Mamabug. I hope to read more as you continue working on your book!
                          Thank you.
                          ~ 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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