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    Living with MS in the State of MS

    Hey y'all. I'm looking for advice. Take your time I'm not going to make this decision fast.

    I have had MS diagnosed 4.5 years. I've had 9 relapses. 2016 there were FOUR. I take aubagio.

    So a little background on life, I spent 2014 to early 2017 at an aquarium job that required me to be outside in the heat a lot. I had seven of the 9 relapses during that time. My doctor said "Thank goodness!" when I realized I needed to leave. (There were dolphins, sting rays, alligators, and tropical bird every day. It was hard to say yes to health over so much fun!)

    I only had one relapse this summer but it's been HARD. Mississippi is HOT. All the time. Summer isn't 3 months, but closer to 6. I have gone to Wal Mart and unpacked groceries and can barely do that. It was 87 degrees at night last night so I couldn't go see my friend play music at an outdoor venue.

    Because of the number of relapses, constant heat, and having issues doing many hobbies I enjoy my husband and I are thinking of moving to a cooler area of the US in 2-3 years. Has anyone done this? Did it help? I don't expect that life will be perfect as snow can be an issue and I might still stay inside a lot. However, it's been too much time and worry in this climate and I am wondering if it might be better or at least bad less of the time! Weigh in at your leisure I'm not in a rush to move away from those I love. However, I think they would all rather visit me healthy than worry about me so much close by!

    #2
    Originally posted by Blue Skies and Butterflies View Post
    Hey y'all. I'm looking for advice. Take your time I'm not going to make this decision fast.

    I have had MS diagnosed 4.5 years. I've had 9 relapses. 2016 there were FOUR. I take aubagio.
    I did continue to read the rest of your post, but have you considered switching the DMD that you are using? Maybe another one would be more effective for you?

    Originally posted by Blue Skies and Butterflies View Post
    So a little background on life, I spent 2014 to early 2017 at an aquarium job that required me to be outside in the heat a lot. I had seven of the 9 relapses during that time. My doctor said "Thank goodness!" when I realized I needed to leave. (There were dolphins, sting rays, alligators, and tropical bird every day. It was hard to say yes to health over so much fun!)
    I can totally relate to hating to give up on playing with the animals! I have always felt that the perfect job for me would be at a zoo - where somebody else paid the food and vet bills and I just got to feed them and play with them .

    Originally posted by Blue Skies and Butterflies View Post
    I only had one relapse this summer but it's been HARD. Mississippi is HOT. All the time. Summer isn't 3 months, but closer to 6. I have gone to Wal Mart and unpacked groceries and can barely do that. It was 87 degrees at night last night so I couldn't go see my friend play music at an outdoor venue.
    Yeah SC is the same - and humid UGH!


    Originally posted by Blue Skies and Butterflies View Post
    Because of the number of relapses, constant heat, and having issues doing many hobbies I enjoy my husband and I are thinking of moving to a cooler area of the US in 2-3 years. Has anyone done this? Did it help? I don't expect that life will be perfect as snow can be an issue and I might still stay inside a lot. However, it's been too much time and worry in this climate and I am wondering if it might be better or at least bad less of the time! Weigh in at your leisure I'm not in a rush to move away from those I love. However, I think they would all rather visit me healthy than worry about me so much close by!
    I had these thoughts (briefly) a number of years ago. I listed the pros (better health care, better weather) and the cons (not knowing the support systems in place at new location, loss of family and friends close by, the stress of moving ) and decided that since there really isn't anything that can be done for MS that I would just stay put.

    But that is just my 2 cents worth - there are others on here that HAVE moved and I am sure that their opinions are what you are asking for. I just basically wanted to say "Hi and welcome to MSW" and to let you know that at least one person related to you . Good luck with your decision.

    Comment


      #3
      I don't, personally, have trouble with MS symptoms related to heat. I'm grateful for that KS can get hot too.

      However, my understanding is that symptoms related to heat are usually pseudo-flares, not real ones. When you get rid of the trigger that is causing the pseudo-flare, the symptoms go away. If your symptoms are lasting 24 hours or more, it sounds like you are having real flares. If that is the case, I would question whether it is the heat that is causing them.

      I would also, like msgijo, encourage you to consider trying a different DMD. When I switched doctors quite a few years ago, I'd been having 1 or 2 MS flares per year on a DMD. She told me, immediately, that if I am having one or more flares per year, my DMD is not effective. She switched me to a different med. My flares have significantly decreased in both frequency and severity. I have not had a flare, now, since 2014.

      Although moving out of the heat might reduce your symptoms, I'm not sure that it would reduce the number of flares. Please consider talking with your doctor about trying a different DMD.
      ~ 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


        #4
        Hello Blue Skies and welcome to msw. I wanted to say I totally agree with Mamabug and msgijo to talk with your neuro about changing DMD. It may be the answer.

        Wishing you the best.
        God Bless Us All

        Comment


          #5
          Thanks for input everyone! Here are a few answers to questions asked or suggested in your replies.

          A. Aubagio is my third medicine. I tried Copaxone and had three relapses. Switched the Tecfidera and broke out too bad. Switched to Aubagio. Any suggestions on medicines that are going well for y'all?

          B. These were absolutely legitimate flare ups. There were MRI scans and steroids and hospital visits. I know heat is supposed to be temporary symptoms but can constant heat cause a flare up? I've heard different things.

          C. I went to England recently in spring on vacation and if anyone has been to London you know there is a TON of walking! I could do it all without needing to stop until the evening when we were done! I love the outdoors and hope to go somewhere one day that I can actually be outside and not feel miserable. Any insight to those who may have tried new climates?

          Comment


            #6
            Hi Blue Skies:

            I'll give you my 2 cents worth as I'm also considering on making a move to a cooler climate. Ironically, I was diagnosed after I had spent a month visiting with friends and family who lived in Houston and New Orleans. I was there in July-August. When I came home, I had a right side weakness/numbness and had lost sight in my right eye (optic neuritis).

            Home at that time was SW Ohio, where summers are usually hot and humid (nothing like LA, TX or MS (have relatives in Biloxi) and it cools down Oct-April. I had a couple of mild exacerbations, (was on Copaxone) from 1995 -2006, but no more ON. Still had to pretty much avoid going out much in the summer (I do have difficulty with heat). We moved to NE Ohio in Summer of 2007. Before we moved I did a great amount of work, mainly outside in the heat (August) on our house. When I got to our new house in NE I had a big exacerbation - ended up in hospital for three days. Neuro's up here thought it was a combination of the heat/stress associated with the move. They also changed me to Tysabri. No more exacerbations while living in NE Ohio - living close to Lake Erie summers are cooler, less humidity, but there is a lot of snow in the winter. I enjoyed living there. It's amazing what a difference 255 miles makes!

            Unfortunately my dad became seriously ill in 2013 and I returned to SW Ohio. Again avoided the heat, but I couldn't find a good neurologist and due to my dad's illness, was not able to make 5 hour trips north to see my old neurologist. Ended up not taking any DM's and pretty much "put up" and pushed aside my MS symptoms - my dad consumed my energies full time. My spouse (who had stayed in NE Ohio asked for a divorce in 2015) my dad passed away two months after that. I am still living in SW Ohio, this summer seemed a bit milder so I spent most of it sitting out on my deck enjoying the weather. I also decided to return to work part-time, which has been a bit more stressful than I anticipated. On my days off I spent them outside, it has been humid. I had an exacerbation big time this August.

            Because no neurologist here (I live in a large metro area!) could see me until the end of September, I ended up driving back to my NE Ohio neurologist. I asked him if he felt the weather played part in my new exacerbation. He said while weather plays a part in MY MS, he felt that the stress of taking care of my dad, dealing with my divorce and the new job along with my not being on a DM for 4 years were probably also reasons why my exacerbation took place. I'm getting an MRI next week down here and will be going back to see him in November to see if I can go back on a DM. Unfortunately it doesn't look like I'm going to be able to go back on Tysabri since I'm now JCV positive. While I like living in NE Ohio, they have a great MS Center and could go outside in the summer with no humidity issues, right now I'm going to have to stay put here. At least Fall is on the way.

            Like others have mentioned, I think the best you could do right now is talk to your neurologist and get input from him/her. Make a list of the pro's and con's. I'm not sure what your financial situation is like, but you may want to do like my in-laws (who had lived in LA most of their life) did. They "thought" they'd love to live in the "North" with no snow, but they "tried out" other parts of the country a few years before retiring. They spent a month in Michigan in January, and another month in Colorado; the next year they tried Arizona, Idaho, Maine and finally upstate NY. While neither had significant health concerns, they discovered that they liked the South the best and ended up in all places -MS!!!!

            While I'd love to move back to NE Ohio if I could, unfortunately the cost of doing so (it cost about $5K for my move) is the major factor that holds me back. I don't have any sort of support system down here, even though I grew up here, I don't have friends now I've come back. However I do have a very good internal medicine doctor and am getting some help from a social worker who are both trying to get me integrated back into the city. So I'm staying put for now and will make the 5 hour trip back North in November.
            Don't worry about the world coming to an end today.
            It's already tomorrow in Australia" - Charles Schultz

            Comment


              #7
              Thanks everyone!

              After a variety of varied responses, this decision didn't get easier but I think I have some things decided.

              A. I'm going to get an appointment with my neurologist and discuss a new medicine. Also thoughts on a possible move.

              B. I'm letting everyone know that the place I'm thinking of moving has mild summers even though winter is snowy, good MS facilities, and two good friends. I won't depend on them 100% of the time, but my husband and I would have some contacts as opposed to none.

              I genuinely appreciate your sincere thoughts for better or worse!

              Comment


                #8
                Quote:
                Thanks for input everyone! Here are a few answers to questions asked or suggested in your replies.


                A. Aubagio is my third medicine. I tried Copaxone and had three relapses. Switched the Tecfidera and broke out too bad. Switched to Aubagio. Any suggestions on medicines that are going well for y'all?

                B. These were absolutely legitimate flare ups. There were MRI scans and steroids and hospital visits. I know heat is supposed to be temporary symptoms but can constant heat cause a flare up? I've heard different things.

                C. I went to England recently in spring on vacation and if anyone has been to London you know there is a TON of walking! I could do it all without needing to stop until the evening when we were done! I love the outdoors and hope to go somewhere one day that I can actually be outside and not feel miserable. Any insight to those who may have tried new climates?

                My responses:
                A. I don't have any additional suggestions for meds to try. I switched from Betaseron to Copaxone; Copaxone works well for me. But, you've already tried it. We're all different.

                B. Maybe it could be. For me, it's stress that causes real flares.


                Quote:
                After a variety of varied responses, this decision didn't get easier but I think I have some things decided.

                A. I'm going to get an appointment with my neurologist and discuss a new medicine. Also thoughts on a possible move.

                B. I'm letting everyone know that the place I'm thinking of moving has mild summers even though winter is snowy, good MS facilities, and two good friends. I won't depend on them 100% of the time, but my husband and I would have some contacts as opposed to none.

                I genuinely appreciate your sincere thoughts for better or worse!

                My response:
                Best wishes. Glad that you'll be talking with your neuro. Hope you find a solution that works for 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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