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Saw my MS neurologist for the first time...

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    #1

    Saw my MS neurologist for the first time...

    So the good news is early December a bit before I was diagnosed I started to get really dizzy and my balance got worse. I was certain I would eventually not be able to shower baths only. Then it got a bit better.

    Last night I went to the bathroom and my balance and dizziness was the best its been since it first started! Woke up today and as long as there's a flat surface I don't even need my cane!
    Things are better, still have poor balance and get dizzy. But it's something good.

    So my neuro showed me my MRI brain and ya. TONS of white marks, lesions. She said I have very advanced and aggressive MS. Meds are happening. She offered 3 treatments, one was chemo which had a ton of side effects, one was tryp-- something, I can't remember the name but it's not covered under gov't insurance. I chose the 3rd its called Rebiff or something.
    The T one needs a lot of testing to see if I can take it. If I can I'll get insurance.

    I'm really looking forward to this one med. I just want some relief and am finally on the road to getting it. Happy my mother was crying when she heard aggressive / advanced.
    Neuro also said I'm RRMS as PPMS is very different how it works.

    Finally some progress and answers!!!

    In related news:
    -She said my constant headaches and headaches in general aren't MS related and I should stop taking Advil. Okay, I'll try
    -one of the blood tests was for EVERYTHING. I filled up over 10 viles. One was even for HIV. Very thorough
    -i mentioned Montel Williams as good motivation. She said to not watch him. I think I understand why considering what he uses/advocates. I don't have constant pain thankfully and never really cared for pot. Kind of funny her response being so blunt

    So guys yay!! RRMS, aggressive, meds in the works! And tests to see what further options I can explore!
    Also great balance/dizziness suddenly (great in comparison)

    Cool! Yes, I am being very teenage girl enthusiastic haha
    Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
    Just because we don't feel flesh, doesn't mean we don't fear death
    Tags: None
    #2
    What made neuro say aggressive? Number of lesions?
    Wondering b/c I have many lesions and have not heard "aggressive."

    Comment

      #3
      The lesions and the amount of symptoms.
      She said both were unusually high. Both her and another neuro looked at the mri pics for a while before seeing me. The other neuro was the first to say I had lots of symptoms. Like 10 minutes later the main neuro said that again but also noted the high number of lesions when she asked me to look.
      Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
      Just because we don't feel flesh, doesn't mean we don't fear death

      Comment

        #4
        See, I told you it wasn't PPMS.

        Glad you got some answers and have treatment underway.

        Comment

          #5
          Thanks misslux! You are always so great and knowledgeable

          Does anyone have experienced with Rebif? I read up on some of the side effects and I have read of them before it seems or maybe they seem common to most or all interferon meds.

          Can't wait to shoot up drugs and get my HIV results haha. And me walking better seems like I might not need the cane for the time being. And I was really liking having doors held open for me. I felt like such a pretty girl haha.

          Yes, I use a lot of humour addressing all this.
          Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
          Just because we don't feel flesh, doesn't mean we don't fear death

          Comment

            #6
            Hi Chowda, I've been reading your posts. Glad you got some answers from the MS doctor.

            Like you I was terrified I had progressive in the beginning. My first attack was bad, double blurry vision, pins and needles on entire left side, couldn't move left foot, very, very weak with slurred and slow speech. I would see a little improvement and then not sleep well and have a bad pseudo flare. It was a scary time.

            I am coming up to a year from diagnosis and I have recovered significantly but I still have some symptoms and pseudo flares. I am learning the triggers, lack of sleep, UTI's, so I am not freaking out as much.

            I've been on rebif for 10.5 months, done well. I have a few side effects on occasion but I only take something for it when needed. I take it Sun, Tue, Thur and have my weekends off. I find if I drink a lot of water and move a little bit after I take the shot, a short walk or even just waving my arms will keep the side effects always.

            I had an MRI 6 months after I started Rebif and there were no new or active lesions, and several were smaller than previous MRI.

            I wish the best for you!

            Comment

              #7
              I've been on rebif for 1 and a half years and doing well. I had a mri approx. 6 months after starting and had fewer and smaller lesions.

              I do not have any bad side effects. The only thing I have is some shot site reactions. Some swelling. Been working on that and seems much better.

              Over happy with rebif. The nurses and call center are awesome. They help with whatever you need. Finance, site reactions, side effects etc...

              Glad to hear someone so optimistic and cheerful. I needed read your post.

              Good Luck!!!
              DIAGNOSED=2012
              ISSUES LONG BEFORE
              REBIF 1 YEAR

              Comment

                #8
                Chowda

                Hi! I am also on Rebif. Loving life once again. I drink plenty day of injection, after injection massage the area for a full 2 minutes to help with reactions. I take in evening prior to sleep with 2 Tylenol pm and have very little issues. Am doing good. I wish you good luck also.

                Comment

                  #9
                  Chowda: I have been on Rebif and am now on Tysabri. I too have an aggressive form of RRMS, now SPMS. Some things you should know about the meds. All of the CRABS drugs (the shots) have about a 30% efficacy for preventing new lesions and new exacerbations. Most of the pills have a 50% efficacy (exception Aubagio 30%) for preventing new lesions and preventing new exacerbations. Tysabri has an 80% efficacy for preventing new lesions and new exacerbations. Tysabri is the best for aggressive MS. It has basically stopped my MS in its tracks. I have no new lesions. I have had a couple of exacerbations over 2 years, but no progression on MRI.

                  Discuss with your doctor which is the best for you in the end, but I suggest you read about all of the medications here in our medication section before you make decisions.

                  Good luck!
                  Take care
                  Lisa
                  Disabled RN with MS for 14 years
                  SPMS EDSS 7.5 Wheelchair (but a racing one)
                  Tysabri

                  Comment

                    #10
                    Chowda, last I checked, Tysabri* is not on the Ontario Drug Formulary (i.e., can't get it through the Trillium drug program) and is only available through an exceptional access program when other treatments have failed.


                    *I checked because my friend who has PML (not from MS) mentioned Tysabri to me.

                    Comment

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