Announcement

Collapse
No announcement yet.

Exclamation @ Rest Area 51 Paging ALL MS Newbies Oct 2 '11

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Exclamation @ Rest Area 51 Paging ALL MS Newbies Oct 2 '11

    Welcome to Rest Area 51... a special haven or your New MS family for 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 . 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 berried in the leaves. Either that or playing hookey!

    Judy.. How was Vegas? I hope you enjoyed your getting out of the house.


    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. For those who stop in and say hello each week, thanks.


    Hope everyone had a good summer!

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


    Cooler Weather;
    Now that the HEAT of August is gone, I find I am walking just a little bit better. Have any of you found things improve some with the cooler fall weather?


    ?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 Enjoy fall...Y'all (but don't FALL)

    #2
    Hey gomer! I'm feeling pretty good, this flare is finally ending it seems, the dragging pain is subsiding and I'm pretty close to my normal. Or my new normal I should say.

    Another good thing, I collected all my medical records a few months ago and finally got up the nerve to read them and get them all organized. I found a couple things in them that surprised me. My doc has always said my brain lesions were pinprick and nonspecific for ms, but my last mri showed "several punctate lesions suggestive of early Dawson fingers" and he never mentioned that to me. I still don't have any brain lesions that meet the McDonald size criteria. But on the bright side, I did find he's really advocating for me behind the scenes. Apparently the place I get my mri's done had a new radiologist and her report had almost zero details and used a different technique, and there's a handwritten note from my doc blasting her report and demanding it be fixed, and then there was an addendum with more detail. I mean really, the report didn't even give a lesion count for crying out loud. But at least now I feel more trusting of my doc knowing he's got my back even when I'm not looking.

    Comment


      #3
      Welcome starry...........

      My famdoc also advocated about getting the MS Dx formalized, after a new eye doc opened the MS can-o-worms.
      He called me in for a URGENT office visit where he gave me a MS it fits speech. (just before my first neuro apt)

      I have also been doing a little better, might be the cooler weather is helping? I know when it suddenly got hotter I felt the neg impact. I also started amantadine yesterday so that could be contributing. I did sleep better last night.

      I had an eye doc for 10-12 years who put almost NOTHING, in his report to my fam doc. Just that my vision was very bad. Needless to say he was REPLACED.

      Gomer

      Comment


        #4
        Beyond New and Do Not Want To Be Here

        Haven't been diagnosed but have a drs appt at 9am tomorrow. Many of my symptoms have been lurking around for quite a while but I have been ignoring them, I grew up in a family where you just don't complain, period! The symptoms are getting harder to ignore and hide. My Psychiatrist made a list with me, did some balance tests and well I have an appt tomorrow. So I am here and the more I read the worse I feel. The fact that I am not the only one who hears music makes me feel worse not better. I honestly do not know if I can do this.
        M.
        A question that sometimes drives me hazy: am I or are the others crazy?
        Albert Einstein

        Comment


          #5
          maitrimama... hi and welcome!

          "My Psychiatrist made a list with me, did some balance tests and well I have an appt tomorrow."

          One thing to keep in mind...(puntended) the HARDEST thing for the human mind to deal with is knowing there is an unknown. Short & simple.... there is no way to deal with the unknown, however even bad news can be dealt with. By learning what you are dealing with can be a double help. MS or other, only when you know, can you treat it, plus it should help mentally as well.

          Gomer You CAN do it!

          Comment


            #6
            Awkward

            I feel awkward particpating here now. I had four years of MS problems and then out of the blue I was in remission. I have been in remission since May. My life has returned to normal and I am getting on with life as it used to be.

            I will hang out here if I can offer any advice but I feel awkward about talking about myself and how great things are in the midst of people in so much pain and discomfort.

            Of course I do know I have RR and it could be back at any time. But I am just about to get caught up on things that were left undone for actually four years. Of course as I finish things my "honey-do" list grows.

            I am working on setting up a medical mission. The love of my life. So far I have a bid for Nicaragua and Dominican Republic. Neither have solidified yet. I want to get any trips set up while I am feeling great and to do the most good.

            Right now I am helping a friend with her parents, one with a newly inplanted pacemaker and the other with dimentia.
            The friend needs a break twice a week so that makes me feel good. I am also doing blood pressures on the homeless/feeding program. I work with a Judeo/Christian clinic that will treat my people for free. Another good feeling.

            Take care all of you and know that I am paying attention and sitting in the shadows so to speak.

            Dave
            J:

            Comment


              #7
              Hey Hey J.man...wondered what happened 2 U?

              I have also been doing better, but not my old normal, if U can call that normal?

              I started amantadine and the weather is a bit coooler.

              Jman...ya been there done a lot of it, and then some, would be nice if you could drop by from time to time. It's nice to know MS can take semi-vacations once in a while.

              Gomer

              Comment


                #8
                Last week was a decent week for me and i was hoping it would continue through this one. I guess i can't be that lucky. I woke up this morning so dizzy i was actually stumbling and running into things. (well more than usual ) It makes it very difficult to work, especially since i'm in front of a computer all day. I try to close my eyes thinking it will help and i just feel like i'm spinning. It's so crappy. I really hope it goes away. I don't know how long i can stand this. I guess this will be something else to discuss with my neuro next week.

                I hope everyone is doing well and enjoying the cooler weather. The leaves are starting to change in PA. I think in another week or so it will be really colorful. IMO that's the best thing about fall. Well that and Halloween candy. lol

                Comment


                  #9
                  Fall has always been my favorite season, not so much now that it seems clear that I will be a fall relapser. My attacks have been Sept, Nov, and Sept.

                  Comment


                    #10
                    Movin this thread on up 2 B seen/found. When its quiet in the rest area we get lost.

                    The weather here is been mild, really nice for a change. A bit cool at night, and not too hot in the day. Seems to help me anyway. Just not looking forward to ICE, SNOW and bitter COLD.

                    Ideal, 70 deg, 40% humidity with light fluffy clouds.

                    Gomer

                    Comment


                      #11
                      checking in

                      Hi all!

                      I am waiting for Oct. 17 - when I get seen @ the MS Clinic at Virginia Mason's Neurscience Center. Looking forward to hopefully getting more answers than we have so far.

                      This week is to be spent collecting things to take with me - my MRI on disc and medical records. Probably taking some notes of what my relapse history has been and writing down the questions I want answered.

                      Really, I'm hoping that we will talk to someone who is interested in helping us figure out a course of treatment specific to what I am dealing with. And quite honestly, I've not been convinced at all that DMD's are the way to go for me. So hoping for more answers/info there as well.

                      Still coping with sx in my hands. Every day that this part doesn't remit makes me more nervous that it is permanent. I just try not to think about it too much.

                      Comment


                        #12
                        I am just resting this week. Vegas was wonderful last week. I did well but by the last day, i was walking really slowly. Dd een noticed....but I am so glad i went, what a mood booster. I laid around mon, and tues. today i did some yard work and was more tired than when Iw as on vacation. It was funny cause last time i was in Vegas, I walked up and down the strip. this time, we stayed within a very small radius, but loads of fun./

                        Therapist cancelled again and I really needed her this week. time to look for a new one, so that will be my job next week.

                        Good thing i do not drive much cause out of 3, we have one car that runs and dh needs it for work.

                        Have ag ood week everyone.

                        AJudy Sz

                        Comment


                          #13
                          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.

                          Comment

                          Working...
                          X