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  • kc41101
    Hi There,

                        Just wondering if anyone else has been diagnosed with RRMS but it feels like you never quite get get out of a relapse so you never really know when you are in remission? For me ever since my trip to the ER that lead to my diagnosis 11 months ago I have stayed fatiqued, shaky, problem balancing and at times confused. From what I've been told (since been back to the hospital 2x) I have had at least 1 major  flare up and steroid treatment but I can't tell if this helped or not. My neurologist says for my history it's to be expected. 
  • lisa76
    There are symptoms that do linger. Like the occassional burning sensation in my right leg. It's not everyday though. When it did get bad I was put on steroids and that helped a lot. I have optic neuritis in my right eye and sadly never regained my vision. But other things like fatigue, that hazy feeling and weakness seems to come and go. There's good days and well not so good ones. Wish u the best.
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  • michd2006
    I just posted a topic about this too.  I have battled these symptoms for the last 9 months.  After my first IV steriod treatment I did feel better, actually my symptoms disappeared for 2 1/2 weeks then gradually returned alittle at a time until end of june when I was really bad and that is when I was diagnosed with RRMS.  I started copaxone on Monday.  I am so very frustrated that I can't get these symptoms to level out or go away.  I have to be strong for my family, but today I honestly just want to cry. I miss the old me, the exerciser, multitasking, ER nurse who was awesome a year ago.  I want her back so bad right now!  Thanks for sharing, it feels comforting to know I am not alone with the RRMS symptoms not resolving.  I will learn to adjust, just having a really crappy day....yesterday I was upbeat, sorry to be a downer today.
  • Bill
    You are not alone in this fight. I have been going thru this for three yrs now. Does not seem that long compared to others. I started Copaxone right after I was diagnosed and three months later they said I was in remission. But I still had left over systems that never have stopped. It is hard for some people to understand how MS affects us and our the beginning of this year I had a relapse and had to stop working for three months until I was able to get it under control. I guess what I am trying to say is don't give up, for me it got easier to deal with and to just except what comes my way. It is a fight that we can win
  • sue4nell
    Never apologize for having a bad day.  We all know what you're feeling.  Hang in there and may you have more good days than bad.
  • bella1010
    Just read your post and thank you so much for sharing. I have been feeling like I've been alone with these things for a very long time! I tried copaxone but was allergic. Tried tysabri but can't take anymore because of the exposure to that JC virus. Tried avonex but broke through. Tried Rebif but broke through. Know anything about that new drug tectrifera or something? Or does anyone?? Anyway, totally relate to the mood swings too. I think I liked being in denial but I guess I am not so much now. 
  • gmnrn
    Dear Michd2006,

    I feel your pain.  I am a Critical Care Nurse, and have been living with MS for 13 years now.  I also get embarrased or frustrated at work, emotional...I sometimes have difficulty saying the right word, but atleast my body is able to work at fast pace.  I used to be so athletic, loved fitness, but fatigue has taken over my life.  I wish you the best with Copaxone.  I have been on Avonex for 12 years, but do to "needle fatigue" my neurologist is putting me on oral med..Guess we'll see.

    Take care, and good luck!
  • hennkolt03
    Your post brought tears to my eyes because i feel that cry out for the person I was before my diagnosis as well.  I was diagnosed September 2012 and spent 13 days in the Cardiac ICU because my flare up messed with my body to the point I experienced stress induced cardio myopathy.  When this happened, I had just landed my dream job, I felt that all the things I had been working towards for so long were finally starting to come together and then I was completely knocked out of my game.  You are still awesome now, I'm sure of it even if we don't know each other, but I know it's a differnt feeling than what you have felt in the least it is for me.  Strength to you on all your days.  
  • greeneyedcatt
    Omg! I was a busy rn a year ago too! Now i cant feel my legs sometimes but the blurring of the vision is my *****job symptom that wont leave me! So i share (in emotional tears, another ms symptom that took residence) with you. Your post really got me! Thank you! I am not freaking alone
  • unbridledspirit


    I have finally found someone who sounds like they r in a boat similar to mine floating on this ocean of unknown. I've been floating out here for over a year alone.   So many "I used to be able to...'s"  Some days are crappy, some days I can handle the changes.  And I have cried and will again.  I, we, have to learn to accept the new us.  Thanks for sharing.

  • Alexopoulos77
    Hi michd2006,

    im so glad I came across this post today because I have also been wondering/worrying about my symptoms. I keep thinking it’s getting worse since they haven’t subsided yet. I was DX’d in July, was given the IV steroid which helped also for a week or 2, I have also been put on Copaxone 40mg for about 1 month now and have had symptoms pretty much every day. Mainly shaky legs, tingly hand and now My right eye is a bit blurry, thinking it might be optic neuritis? Waiting to hear back from my doc for his thoughts. Hoping the Copaxone is going to work for me, but the doc told me it doesn’t kick in for 6 months :/  You are definitely not alone!   
  • dave74

    I have some symptoms that do go away, but theres been one major symptom that will not.  It seems persistant.  The problem is that MS is a disease where doctors have put folks with it into categories.  However we must remember those categories are entirely man-made, nature does not have to follow our rules.
  • Moon_Mom
    I know exactly what you mean!! I was diagnosed in Dec 2011 after 2 "episodes" in the previous 3 months. I'm really not sure what to call a relapse because I have problems that come and go frequently (more coming than going). It's hard when people don't understand this disease and think that all of us should have exactly the same symptoms or we are just making it up. It can be so frustrating. I understand completely what you are going through. Just know you are not alone.
  • Lainie
    You are not alone! I was also diagnosed with RRMS, but I never, never once felt like I was in remission. I have heard people with RRMS describe it as having 'good days and bad', but for me it is only bad days and worse days!
  • alchemie
    Same here. I always have symptoms going on - tingling in both my feet & legs, constipation, cognitive issues, as well has the fatigue. My left eye has never completely recovered from Optic Neuritis either.
  • 11SHB59
    I was diagnosed with RRMS and have been dealing with constant (non-remitting) symptoms for a very long time; almost like a continual relaps that never eases up.
    Although we are told we will have 'good days and bad days', I don't think the good days are much better than all the rest.  MS is such an exhausting disease; physically, emotionally and mentally.
    I see my neurologist as often as I need to because of the ongoing problems with my MS, and she asks me the same questions every time...  I tell her the symptoms aren't letting up, but I don't think some doctors fully understand MS and the wide array of differences MS sufferers go through.
    This disease doesn't follow standard patterns or paths.

  • BrendaJ
    I have felt the exact same way since being diagnosed with RRMS in 2007.  My initial symptom (numb, tingling feet) has always been present.  The fatigue I battle, along with the issue of my feet, is pretty much constant.  I've been waiting and waiting for the "remission" of these two factors to occur.  As of yet, it hasn't.
  • TinaLVanEss

    Lainie wrote: You are not alone! I was also diagnosed with RRMS, but I never, never once felt like I was in remission. I have heard people with RRMS describe it as having 'good days and bad', but for me it is only bad days and worse days!

    I have RRMS, and was first diagnoised after having optic neuritous 3X's.  I have fatique on occation, problems with balance ocationally, and problems finding words when I speak.  The only sypmtom that seems to be around all the time is the speach problem.  Fatigue typically follows when I get over heated so I try to avoid that.

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