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@ Rest Area 51 Paging ALL MS Newbies Oct 9 '11

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    @ Rest Area 51 Paging ALL MS Newbies Oct 9 '11

    newbies Dx'd w/MS in recent days or years and newbies at .

    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 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.

    We need some volunteers to rake the leaves around our Rest Area. I think some of our crew may have gotten buried in the leaves.
    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 advantage of our Rest Area 51, PLEASE grace us with your presence, we miss you. 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 Week? ........
    ...Good I hope, Any Dr. apts tests etc?

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


    Gomer Officially "Retired" now, so says Uncle Sam

    #2
    I'm fed up. I started gabapentin a couple weeks ago, and while it helps some (it controls the allodynia) its not really touching the burning pain in my butt, legs and feet. I just decided to go this week and get an mmj card to see if that helps. I can't deal with this for the weeks it would take to get back in to see my neuro.

    This really isn't a snap decision, I've been considering mmj for a year or more, I just kind of put it off. Most of the time I feel fine, and when I do get into this kind of pain, it goes away in a couple days, then I forget about the mmj until next time. I'm kinda reluctant to do it, I've never smoked pot before and it seems kinda ludicrous to be trying it at 43, but the stuff the doctor has isn't working and I'm not crazy about the side effects.

    Comment


      #3
      Shelia..HI and WELCOME.

      I copied your post here, to the newest thread, hope you don't mind

      "I'm feeling quite crappy. Muscle pain everywhere, MS hug every night for 2 years, don't sleep much at night, touch of optic neuritis, a cataract has started in my eye, wake up choking at night, legs are on fire, feel like a wet dishcloth, legs get so weak I shake and can hardly stand, voice is so hoarse it hurts to talk, vision is blurry, still fighting to get disability (9 months now). Just diagnosed last mo. Neuro says it's RRMS but I've had constant digression over the past two years. How do I tell him I think it PPMS? Do I just wait for him to figure it out? ah. That feels better."

      Thanks for using our soap box..... I am glad you feel better after venting, we ALL need to do that from time to time.

      Neuros are reluctant to dx progressive over RRMS
      , one its not a clear line between them, and second having a Dx changed from RRMS to SPMS (or PPMS) limits treatment options that ins will generally cover.


      Gomer

      Comment


        #4
        Crew! Where in the world R U this week?

        Movin this thread up, got lost pages back here.

        J-man..... Judy et all......

        I feel very lonely here this week.

        Gomer

        Comment


          #5
          Hi Gomer ::waves::

          I had a neuro appt on Wednesday. The tension in my muscles is spasticity and my neuro decided I needed a stronger muscle relaxer so he prescribed Baclofen. I took it yesterday and it seem to help a little better but not a whole lot. I guess I'm doing alright according to him. I'm supposed to continue with my Copaxone and he's planning on doing an MRI in January. (Of course January, couldn't be in December when I wouldn't have to pay anything ) He is concerned a little with my injection site reactions and if it doesn't get better he's considering switching me. I personally would rather have red itching lumps than feel like I have to the flu every week. Oh well.

          I hope everyone had a good week. Happy Friday. I know I'm excited for the weekend. I have to start working on my Halloween costume. Yay.

          Comment


            #6
            GOMER

            I am here each day but am not commenting. I am watching for someone who needs my knowledge or reassurance.

            I am doing great. I began to work yesterday setting up a mission trip for Central or South America. The person I talked to also suggested that I look at their Caribbean program. So... I am also working on getting re-certified for my Nursing license. I let it go as I had no hope of ever using it again. I guess one never knows.

            I am quietly here and watching. You know me - I have a hard time being quied.
            Dave
            J:

            Comment


              #7
              Hi there! I was dxed in January of this year. Started copaxone in December of last year. Am going back to neuro on Monday, for a "annual check up" I moved it up a bit, as I felt had had a relapse, but honestly, sometimes I wonder still what is a relapse and what isnt. My symptoms, I feel are mild, and I cant tell if the copaxone has made a difference. I am currently experiencing intermittant muscle spasms, my gait is good some days, and bad others. I know the stress at work, over the summer was too much, and I cant do that again. I asked my partner what he thought over the year, and he said he say a slow slow decline. I also mix my words up, from time to time, but not all the time. Wondering about what to ask neuro?
              i have my copaxone book, with daily charting, i usually make notes. but not always, lol. So thanks for listening to me, We dont have a local ms support group where I am, but am in touch with a few people., and of course take advantage of chat on here!

              Comment

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