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told MS Friday Help please

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    #1

    told MS Friday Help please

    Hi,

    After 20 years, one optic neritis, one lahimets, I now have MS. There is a well-defined focus of high signal on T1 and
    T2-weighted images within the T2 vertebra most consistent with a hemangioma.
    I have spastic right leg and go in for 5 days IV steroids. Will they help? This is on my neck. Brain unchanged. Can I get better? Drug thoughts? New treatment?

    Saezrj
    Tags: None
    #2
    Really all these reads and nothing???

    No one has anything to say? So so sad!

    Comment

      #3
      The IVSM may help or it mat not. I think the lack of replies is down to nobody being able to give you a definitive answer.

      The first time I got IVSM my symptoms disappeared completely. I hope the same happens for you
      Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

      Comment

        #4
        sorry

        Sorry, that no one has posted. I can't offer much advice because I am still in limbo myself. I hope that you are able to get answers. I am here if you need to talk.

        hlburke87

        Comment

          #5
          Hi saezrj and Welcome!!

          Sometimes not a lot of people are on board, but please be patient! I myself have been watching the US national football playoffs today.

          As far as going on steroids, the verdict, in my mind, is still out. I had optic neuritis years ago and was given a 5 day IV treatment and didn't do too well with it. I have read here that many, many people have great results, so take my experience with a grain of salt. I found with subsequent flares, I did better just waiting it out and asking for others meds to manage my symptoms.

          Here is a lengthy paper from the NMSS on the use of high-dose corticosteroids that will help you to better understand the usage and side affects and the difference betw the use of the IV vs. oral treatment http://www.nationalmssociety.org/Nat...p_Steroids.pdf
          Are you on any kinds of DMT right now?

          I'm sorry I can't be of more help, but wanted to acknowledge you! Hopefully, more people will come along to answer your questions about steroid treatment.

          In the meantime, explore all around and please take care!
          Again, welcome!
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

          Comment

            #6
            Thank you all. Much appreciated! Scared, nervous and yes great football. Wishing us all hope, health and happiness.

            xo

            Comment

              #7
              i wish i could help, but i have never had any steroids. steroids are anti inflammatory in nature.
              WELCOME TO MSWORLD! being newly diagnosed, you must have many questions.check out the newly diagnosed chat. we also have many specific forums for your questions. if you can`t find a forum, try the general questions and answers forum.
              hunterd/HuntOP/Dave
              volunteer
              MS World
              hunterd@msworld.org
              PPMS DX 2001

              "ADAPT AND OVERCOME" - MY COUSIN

              Comment

                #8
                Had optic bulb neur., took 5-6 days of steroids and did really well. All my color vision returned and I can't tell now what eye had obn.

                Comment

                  #9
                  Hi there.

                  I can only tell you about my mom.

                  Was diagnosed at 62 with relapse-remitting. Then had a touch of the optic neuritis the first year. Her eyesight was restored with a few days of SoluMedrol.

                  Her first neuro in 1998 didn't think Betaseron would do much for her...so she went without until 2004. Mom has had other health issues, many hospitalizations (gamma knife for an acoustic neuroma, hydrocephalus, blah, blah, blah-it's all documented and archived on this website) but hasn't had a relapse while on it. No glow-in-the-dark lesions lighting up with contrast during a MRI and she averages two scans a year.

                  Up until recently for the past nine years she was getting a SoluMedrol treatment once a month. Noticed a bump up in the energy department. Her neuro has DC'd it for the time being-he thinks her chronic UTIs are related to the SoluMedrol...never mind that she has a neurogenic bladder-she doesn't completely void. And all those years on a steroid-she's got good bone density.

                  We have a much younger cousin with MS; I think she was diagnosed at 40 years old. She has done the chemo thing, taken the C and A meds...you gotta cherry pick what works for you. There's always a side effect...it's what you're willing to tolerate. Again, I am speaking as a caregiver to a parent.

                  I do recall the first month she was on Betaseron. It was a whole lot more complicated to put the shot together back then even with a Beta nurse coming out to the house. Pre-medicating with Tylenol or Advil to tolerate the flu-like symptoms she continues to do (hasn't experienced any for years) and was able to get over that first month or so hump. She felt like...at night, but would wake up the next day, no fever, no achy bones.

                  I remember when Mom was first diagnosed in 1997. I bought a book that promoted mostly vitamins. Book was from England...I wanna say that England was Johnny Come Lately to the A, B, C meds. Mom also self-injects monthly a B12 shot...and for a time there was taking bee venom in a capsule.

                  I'm trying to get her into yoga...on the local PBS station every morning there's a chair-yoga program. She would rather bake an apple pie.

                  I also have a close friend with MS. She's 48 now...her diagnosis date is a mystery. It's her business. She has decided to ignore all tingling and numbness, continues to smoke two packs a day, doesn't take any of the meds, suffered with optic neuritis for a year and her eyesight finally returned. She takes a multi-vitamin.

                  I'm one of those fair-weather posters. It's a terrific site to surf and post...a variety of message boards.

                  Just jump in...sending you and your family good thoughts.

                  Comment

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