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@ Rest Area 51 Paging ALL MS Newbies Jan 15 '12

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    #1

    @ Rest Area 51 Paging ALL MS Newbies Jan 15 '12

    Welcome to Rest Area 51... a special haven our your New MS family for newbies Dx'd w/MS in recent days or years and newbies at heart.

    Happy...New...Year!

    Take a well deserved break from your MSuper highway,    pull into a nice cozy shady parking spot, Pitch a tent or just lay out a blanket and enjoy the crisp cool fresh air .     Help yourself to fresh Cider and donuts. The camp fire is roaring in the open pit ready for hot dogs, marshmallows and smore's Feel free to share your ideas, experiences and support to your fellow newbies. Relax, you are among friends, friends that understand. We have a virtual soap box, feel free to vent anytime.

    Being a newbie can be as scary and lonely as being in limbo, Remember we are you family away from family. The BIG question answered means many more new questions and decisions.

    PLEASE.... Take a break from the MSuper hwy and let us know how YOU, a member of our MS newbies family is doing.


    Have a QUESTION? Please don't be shy........
    The only dumb stupid question........is the one NOT asked.

    ?How was your Year? ........
    ...Good I hope, Any Dr. apts tests etc?

    ? What does the new Year have in store for you?
    ....Any Dr. appts. tests etc.

     Gomer
    Tags: None
    #2
    4 months

    Well, I'm 4 months into this now and had my 1st flare or so the dr. thinks....so I guess my dx is now RRMS although no one has told me that officially.

    Had my 1st round with Solumederol last month, not fun. And now waiting for insurance to approve Copaxone.

    New MRI of thoracic spine showed "something" per my neuro...

    Bladder out of control, walking and leg worse after flare until yesterday seems a bit better.

    Ampyra seems to have lessened the imbalance feeling and fatigue has tapered too, so that is good.

    Hope everyone else is doing good.
    Prob MS 9-14-04; Dx PPMS 9-16-11; RRMS 12-15-11
    Ampyra 10mg 2xday
    Copaxone 1/20/12

    Comment

      #3
      Hi jbell.......

      Nice to see you here. I am on Copaxone and so far it has agreed with me.(seems to be helping and no bad affects).

      My MS specialist tried getting me approved for Ampyra, but my kidney function is not good enough, so I do not even get to try it.

      My labs thru prompted my fam doc to send me to ER for an emergency evaluation. They were talking of keeping me, but I got to go home later, after poked, stabbed hooked up and banded like bird HaHa. I see my fam doc first thing in the morning. ( a couple weeks sooner than scheduled)

      Gomer

      Comment

        #4
        This week has been way too exciting for me. I witnessed a beating, had to jump out of my truck and run up to help stop the bleeding, hold him still, wait for the ambulance. THEN I had to give statements to the cops and get a good hospital grade scrub down because the guy bled all over my hands and I had no gloves.

        Overall, it was vicious beating I witnessed. THAT didn't bother me. What bothered me was seeing so many cars drive by this beating in progress and NOT stop. I mean, this kid was bleeding all over the place, lying on the ground, and only TWO of us stopped!

        Comment

          #5
          Hi all - I'm recently diagnosed (Nov 2011) had my first round of solumedrol but had a reaction to it and had to change to decadron for the third day of infusion. I started Rebif during the second week of Dec and have now titrated up to 44 mcg. I seem to be tolerating it pretty well except for the flu like symptoms. I have only one brain lesion, thankfully, but have two on my cervical spine and "near complete coverage" of my thoracic spine. My issues have all been motor control related and mostly on my left side. My entire left trunk was numb for about 4 months and I still have pins and needles throughout my left back and leg. I guess this is my new "normal".
          Julie
          DX 11/9/11
          Rebif Therapy 12/13/11

          Comment

            #6
            Completed my 2nd Avonex shot Friday. Very nice, less bruising with this one. No side effects with pre-treatment. Doing well except having some bladder issues I am going to have to sort out- not sure if it's MS or IC (which is like irritable bowel syndrome for the bladder). Other than that all is well.
            Gomer- sure glad you made it back home from the hospital- hope your appointment goes well.
            take care
            ~seeuinct (Connecticut)
            Dx the first time: 10/25/11
            Avonex 1/12-10/12
            Revaluation of Dx 10/12
            Rediagnosis 7/14

            Comment

              #7
              Pacing myself

              Hi all- Just when I think my biggest symptoms are cognitive the fatigue comes in and kicks my butt. Really didn't think I did all that much yesterday till I sat down for the Packer game. Then it hit me. Exhausted, numbness/pins and needles throughout the left side of my body, face and beginning to hit the right side. MS is certainly not subtle, is it?
              Diagnosed June 2011, Avonex 7/11-12/11

              "We don't describe the world we see, we see the world we describe"

              Comment

                #8
                Had my fam doc quarterly this morning, (2 weeks early).

                For now, doubled my BP med and he is sending me to the urologist, for voiding issues, elevated creatinine (kidney), and as possible cause of erratic high BP, see him in 2 weeks. Fam doc suspects its at least partly MS related.

                Gomer

                Comment

                  #9
                  Just moving our Rest Area to a more visable location..


                  Now CREW... where are YOU?

                  Gomer

                  Comment

                    #10
                    I'm here Gomer.

                    I started a new AD on Tuesday and so far no reactions or side effects so that's a definite plus. I had to go to my GP yesterday as I've been sick for the last week and it wasn't letting up. I'm so lucky I managed to get a sinus infection and bronchitis. YAY!

                    I saw my neuro yesterday also. All and all he seems happy with everything although he is a little concerned with my new symptoms. I go for my first MRI since dx next Thursday so let's hope that turns out well. He's order to have both my brain and spine done. I have a feeling that's gonna be a long time in the tube.

                    I do have one concern though. He flashed a light in my eyes several times and then asked me if I was having any blurry vision. In the last 3 months the vision in my left eye has become increasingly out of focus even with my glasses and I told him this and the discussion didn't go any further. Is he seeing something that concerns him or is he just asking for the sake of asking?

                    I hope everyone is doing well and having a good week.

                    Comment

                      #11
                      Another condition to deal with.

                      I just got out of the hospital after two days of not eating. Makes you really appreciate even hospital food. I got my dx this A.M. - Diverticulitis. So that and a flair it has been a bad week.

                      You always ask if we had an appointment. Yes I did - Three hours in the waiting room and six hours in the examining room. I tried to tell my wife to not take me in a teaching hospital. I think I saw eight Docs.

                      As if that wasn't enough they want me to make an appointment with my Neuro. Oh alto I have to have a minor surgical appointment with ENT surgeon. I'll let you know if I live through this.

                      Dave

                      Comment

                        #12
                        10 years

                        Had my 10 th aniversary,,,, Hahaha.Third year in wheelchair and totaly dependent on my wife's help.Got a german device that goes up and down stairs.No medicine did any good so I take only DHC continus tablets for neuropain.Hoping for a mirakle research,,,,,,,
                        DAVSLAV
                        davslav

                        Comment

                          #13
                          Hope you're feeling better.

                          Sorry to hear about your injury. That snow will get you every time. I've had the broken ribs several times and know how painful they can be and just how long they can take to heal. I hope you are doing better soon.
                          Your buddy
                          Dave

                          Comment

                            #14
                            Originally posted by jmfmwc View Post
                            Hi all - I'm recently diagnosed (Nov 2011) had my first round of solumedrol but had a reaction to it and had to change to decadron for the third day of infusion. I started Rebif during the second week of Dec and have now titrated up to 44 mcg. I seem to be tolerating it pretty well except for the flu like symptoms. I have only one brain lesion, thankfully, but have two on my cervical spine and "near complete coverage" of my thoracic spine. My issues have all been motor control related and mostly on my left side. My entire left trunk was numb for about 4 months and I still have pins and needles throughout my left back and leg. I guess this is my new "normal".
                            jmfmwc,

                            4 months is too early to call it the "New Normal". I've had improvements even 18 months later. Keep going

                            Comment

                              #15
                              Hi Everyone

                              When I was first diagnosed, someone here spoke of Dr. Jelenik's book and I got it from the library. It was the best thing that ever happened to me.

                              Here's the website for it. Nothing to buy, but a different twist on MS and a very informative site.

                              http://www.overcomingmultiplescleros...MS/What-is-MS/

                              It's got an attitude and information you are not likely to hear elsewhere.

                              BigA

                              Comment

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