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Lookin for advice and friends with MS

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    Lookin for advice and friends with MS

    Hello! My name is Taylor and I was diagnosed May 4, 2013. I am 22 and a RN for a long term care facility. I have a supportive husband and no kids. I am taking Rebif and I know depression is a side effect. Recently I've been soooo tired and just feel like I just cant get going. Its getting overwhelming. I feel like my brain and body is swimming through concrete. My question is, is this the MS or the Rebif? And does it ever get any better? Thank yall! Just in need for some encouragement!

    #2
    Hello Taylor, welcome to the site. I'm so sorry that you have a reason to visit here but there is always someone that has gone through similiar situations that can share some useful information. I am not on Rebif so I can't offer any advice on that but I can add that summer months, for my MS symptoms, is definately the most difficult time of year. Many MS patients are heat sensitive and I seem especially sensitive when the weather warms up.

    My legs get weaker and feel like jello when it is hot, making walking oh so fun and I do have less energy and am more tired as the heat just drains me. Has it started warming up where you live? If so, maybe the heat has something to do with your symptoms. I have to use a cooling vest at times to go outside and take lots of rest breaks. I also have to drink lots of ice tea or ice water to cool me off before I can even get up and walk again.

    I hope you get some answers to help you out!

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      #3
      My wife was diagnosed about the same time.

      She has cycled thru a dozen medications. Not all of them get along with your body as well as others. We were always told to ride it out for a while to let your system get used to the drug. Usually it did get better in a week or two. The only med my wife did not get used to was Betaseron. She switched off of that after about 90 days on to copaxone and has been on it for a decade. Some don't tolerate copaxone well.

      I would say to talk with your husband and Dr. Keep track of the negative side effects with a journal. That is what we did. It is easy to forget things, and I get blank brain in the Dr office anyway . The journal helps us and the Dr.

      Good luck and hang in there. There is a good med for you. Just gotta find it.

      Comment


        #4
        Welcome Taylor!

        Swimming through concrete. An interesting analogy.

        I would suggest NOT doing what I did my first 15 years or so with MS. I took 200 - 600 mg caffeine pills every day. I then discovered if I would just sleep 7 hours a night instead of 4, I was fine. I was dx'ed in 1988.

        We're retiring the end of the year and moving to beautiful Tennessee. We have a house near Crossville.

        I see you're young and very recently diagnosed. The first 6 months are rough. We understand.

        Tom
        "Doubt is not a pleasant condition, but certainty is an absurd one."
        - Voltaire

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          #5
          Hi Taylor and welcome! I'm not sure which is the cause but I can share my experience. I went on rebif last June when I was diagnosed with ms, and went off in november, I think, when the depression became unmanageable. I don't remember a *dramatic* increase in fatigue immediately going on the rebif but it was a hard summer energy-wise which I thought was the ms acting up. I was working throughout the summer - but was complaining a lot!

          Wish I could be more helpful! Such a dramatic change makes you wonder. Do you live in a hot climate? Did you have a flare-up precipitating the diagnosis which required recent steroid treatment?

          I hope you get some good answers to this, it's a great forum. I'm curious to hear other's experiences as well.

          Hang in there!

          Comment


            #6
            Welcome in Taylor. New here myself and happy/sad to meet you.

            I was diagnosed in 2007 and only recently began to allow myself to believe that I'm past the "newly diagnosed" stage. Took a long time to accept the evolving nature of my new body. Learning about my new "MS self" has been a much grander adventure.

            It doesn't really matter what is causing fatigue and depression (MS, medication, weather, etc.) it's all depressing stuff but it is what it is. There are many medical concerns and options to consider of course. That said, introducing yourself here is great because the potential for overwhelming isolation is one of the most cruel unspoken traumas of MS.

            My suggestion is to ask, learn, and record what you can about MS then... take a deep breath and return to your life's regularly scheduled programming. Feeling "normal" about living with MS can be a real pain in the... and stress and anxiety could take years of your life. I'm 40 but feel like I look 63 and that has nothing to do with MS.

            My advice: Do what you can to mind the white spotted gaps and create your own definition of "normal!"

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              #7
              Thank y'all for the support and advice! I live in Tennessee. So it is quite warm here. I've noticed I've become heat intolerant. I'm not sure which one asked but I had a uti which causes a flare up and led to my diagnosis. But I hope for all Of us things get better. Just gotta make it through the summer

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                #8
                Hello and Welcome Taylor!
                When I can laugh at my experiences, I own them and they don't own me!

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                  #9
                  Taylor,

                  My name is Sandy and I got off Rebif 7 months ago partly because of a deep depression. I cannot say for sure your depression is the Rebif but I bet it is. Try to get on something else.

                  I started Aubagio 3 weeks ago and no side effects yet. We will see after my first set of bloodwork.

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                    #10
                    Hey Taylor, im also very tired most of the time, if you need to change your medication, talk to your doctor about tecfidera, its a new medication. Im on it now, its supposed to be the best thing out right now for ms, there is really no crazy side effects, just a little flush feeling, or a little naseua, i only got the flushed feeling once or twice, its 2 pills a day.

                    Comment


                      #11
                      Hi Taylor, I can't offer any advice but I dealing with the same thing. I was diagnosed 2/14/2013 after a severe attack. I have been on rebif for three months. I had not recovered from my attack before starting rebif so I wonder all the time if the ongoing fatigue and weakness is a result of the attack or the rebif. I am also having some slight depression but I have attributed it to the grief and mourning of dealing with the MS diagnosis.

                      I recently had a UTI which caused my MS symptoms from the first attack to come back. Thankfully that only lasted a couple of days but scared me pretty bad.

                      I have been keeping a log of my symptoms and depression but I plan on giving it 6 months before making any changes.

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