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It's island time - limbo check in 6/26/2012

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    It's island time - limbo check in 6/26/2012

    Good Afternoon limbo island!!! The sun is out and the breeze is blowing off the water. What a great time to visit the island. So grab a cabana boy or girl and order something to eat and drink. Grab a hammock and tell us how your week has been.

    How are you doing/feeling this week?

    Are there any doctors apt this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Any one need to scream?

    In island news - Thewildrose got her dx this week after waiting for 12 years. I am glad that you got answers and can now get the treatment that you need. Let us know how you are doing when you can.

    Also be careful out in the heat.

    If you are undiagnosed then this is the place for you. Come and tell us your story the island is waiting.


    Well I am doing good. Remission is good so i am enjoying it as i know there will come a day when i will be screaming relapse.

    Well i am off to run the kids around and then out to dinner with my BFF. I am not likeing the GA heat. Be careful everyone of the heat.

    Lots of (((hugs))) and will check back in later.

    #2
    This week is VBS at our church!! I have always helped out!! This year I wasn't sure I was going to be able too! But I told them I would do a smaller part this year and just be with the preschoolers!! ( smaller part... little kids what was I thinking)

    Anyway.. Monday just about put me in bed for a week!! I was soooo tried after VBS and it's only from 9 to noon. I told the other leaders that I just wasn't going to be able to do the rest of the week. Came home and took a two hour nap.

    Yet I woke up feeling great this morning, so went, and I felt good after too, not so tired, even tho my little preschooler and me did take a 3 hour nap when we got home.

    It felt really good to be able to do something like I used too!! Now just to be able to go the rest of the week!

    Then a nice weekend just wish the weather would stop raining, altho I don't want it to get super hot either.
    Fighting the MonStor, and the Beast of Depression.
    A fake smile can hide a Millon tearS

    Comment


      #3
      I've been having weakness in legs an arms ,extreme fatigue,balance issues,numbness in hands ,pins n needles ,all of which I had during last flare it's been getting worse an worse for several weeks .

      I called my neuro's office an he at least gave me then 7 day steriod pk, I'm feeling a little better small busts of energy but not the bump I was hoping for . My weakness seems to be a little less . I can climb stairs several times before I get muscle fatigue .

      I just want to relax this week on limbo island an enjoy being waited on by very handsome cabana boys .
      A friend hears the song in my heart and sings it to me when my memory fails .
      (unknown)

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        #4
        Minivanmama, I'm glad to hear about the remission! Enjoy it while it lasts!

        And Mtnhigh, I'm glad you're managing to get out and do one of the things you used to do. I'm sending vibes that you can make it through the rest of the week.

        Tambrown, I'm sorry about the weakness and fatigue.

        I'm trying not to get my hopes up too high about the upcoming spinal MRI. It would be nice if it showed a cause for what's been going on. Even nicer, of course, would be if it showed something that is curable!

        I've realized that's actually what I've been hoping for: a doctor who says, "Oh, sure, that *looks* like MS, but actually, it's _____ and if you just do *this*, then you will feel 1000% better!" I know it's not realistic, but a girl can hope, right?

        Other than that, I was thrilled to find out this evening that my partner was wrong about needing to be in school the day after the kids were done, so *tomorrow* is her last day of this school year. I'm about 8 hours from the ritual un-setting of the alarm clock!! Two months of NOT getting up at 5 to drive her to the train!!
        Accepting reality is not the same as wanting to have a problem. It means accepting something that will be happening whether I want it or not.

        Comment


          #5
          MtnHigh - Good to see you. Glad that you are doing VBS. We did our a few weeks ago and i was warn out but loved being with the kids.

          I know you can make it the rest of the week. I am praying for you.

          Let us know how it goes. Lot of (((hugs)))

          tambrown - Good to see you I am sorry that you are feeling so bad. I pray that the steriords will get you back on your feet soon.

          Enjoy your cabana boy and just relax. Lot of (((hugs)))

          JayEm - Good to see you. I am so glad that school is out for y'all. So glad that you can sleep in. Enjoy the summer brake.

          I am praying that you will get good answers. Let us know how it goes and when you get the results.

          Lots of (((hugs))) and that you for thinking of me.


          Well off to get some house work done and then off to bed. Good night limbo island and sweet dreams. Lots of (((hugs)))

          Comment


            #6
            IT'S GOOD!

            Thank you MINIVANMAMMA for hanging in there for all of us.

            I'm glad we are all kind of back together. I just hope we didn't lose any friends along the crazy maze back in to where we are loved and supported by people who really understand.

            Thanks for all sticking together through all that craziness and confusion that was a small problem but certainly drove us all momentarily crazy.

            Dave, Tampa, Florida
            "Journeyman"
            Weather: 93 deg. and 45% hum.
            Status: four years since dx, four months into what is usually a six month remission. The roadsigns are already starting to show up for my next relapse. The "lead blanket" of fatigue has arrived and I have added four hours to my sleep time. Despite all I know I still get fearful and anxious of my relapses. My loving wife is my caretaker and weather vane. She usually spots my symptomatic storms before I do.

            Comment


              #7
              Hello Everyone!

              HEY, we got our own forum! I have been off the computer for a little over a week. Sometimes it takes over my life and I have to just shut it down completely and refocus!

              My Neuro sent me for cognitive testing on Tuesday to 'test for consistencies with MS or other functional diseases'. Haven't found out the results yet.

              Found out the results of my C-spine MRI (just over the phone). Nurse said that Doc said it looked GREAT. I'm interpreting that to mean there were no lesions. That's good news!

              I have 15-20 on my brain. There were two new lesions (after six months) on my brain MRI, but two had disappeared. My spinal tap was negative for O-bands.

              My follow up appt. with the Neuro is not until the end of July, but they said they would call me once we got the results from the cognitive testing and go from there.

              WildRose...I know it's a two edged sword. I'm glad you finally have closure and you know what you are dealing with, but I'm sorry you have MS.

              It's so hard being 'in limbo'. For me, it takes the 'fight' right out of me because I feel like I am shooting in the dark. Once I know for sure what it is, I think my 'fight' will come back. It's so stressful not knowing...and waiting.

              Minivan Mom: Thanks for the thread, and I'm so glad you are feeling better.

              Welcome Mt.High! I have heard people say that pacing yourself helps. For me, though, sometimes it helps to push myself to get out and do things I enjoy. I'm glad you were able to get out.

              TamBrown: My symptoms are just about the same as yours. I have started back on my vitamin D (10,000 IU's), fish oil, Alpha Lipolic acid and started taking magnesium. I have had a little bit of relief from the leg and arm pain, and my outlook is a little better. I hope you get some relief soon!

              JayEm: I can totally relate with where you are at on the diagnosis thing. My spinal tap was a piece of cake. The Doc did it right there in the office. The shot to numb the pain was the only thing I felt. No headache afterward. Mine was negative, so it didn't help me in ruling anything 'in' or 'out'. My hubby is a teacher, so I know EXACTLY how you feel about feeling 'out for the summer'. Yippee!

              Howdy, Dave!
              "Man's importunity is God's opportunity. He uses our problems as building material for his miracles." ~Corrie Ten Boom

              Comment


                #8
                Greetings gang!

                Well, my long awaited remission seems to be holding.
                Multiple fingers and toes (literally on the toes) crossed.
                Really hoping this one lasts, as it's the first real remission
                I've had since 2008.

                Still can't believe I could erase 2 1/2 years of spiraling losses
                in just 2 1/2 weeks!

                Been back on IR (injured reserve) for 2 weeks now. Chiro's
                been giving me ultra sound treatments for plantar fasciitis,
                and gave me the go ahead to give walking a go this weekend.

                So, I'm On the Road Again this AM. Hoping I'll
                be prudent this time (as if I wasn't before......) and not
                re-injure the tendon. Chomping at the bit. Two weeks of
                nothing but the trainer makes since at -40 degrees....not
                so much at +55.

                Hope you all are finding something to do, that you really
                want to do, this weekend. Take care of yourselves!

                me
                "I'm not limping!! I'm just favoring each leg differently!!"

                Comment


                  #9
                  Limbo-lifer, good for you getting back out on the road again!

                  MVM, glad you're having a remission. Always a welcome happening.

                  Had the c-spine MRI. It will be awhile before the official results are in but to my untrained eye, it looks perfectly normal, again. If the official results say the same, I'm going to have to believe the MRIs are correct and this is not MS. It has to be something else.

                  Having more GI testing later in the week. Maybe something will turn up there.

                  Feeling much better these days, hoping for it to continue.

                  Happy 4th to all the US members.
                  It's not fatigue. It's a Superwoman hangover.

                  Comment


                    #10
                    Journeyman - Good to see you on the island. I am glad that we are all in here together. I think that everyone is slowly finding us.

                    It did take me a moment to figure out we had our own forum.

                    Come and visit anytime and (((hugs))). Be careful out in the heat.


                    Chicken mama - Thank you for thinking of me. Glad that your MRI showed nothing new. I pray that you so find answer soon.

                    Glad that you are back on the island. (((hugs)))


                    limbo-lifer.77 - Good to see you So glad that you are back up and moveing. I am glad that you are feeling good and you are in remission.

                    Enjoy your week and (((hugs)))

                    Lusciousleaves - Good to see you. Thank you for thinking of me. I am glad that you are feeling good also.

                    Let us know what the report says. I still have not been to the hospital to get my MRI report.

                    Hope your GI test will go well and you get some answrs. Let us know how it goes.

                    Lots of (((hugs)))


                    Well i am off to bed. Good night limbo island and sweet dreams. (((hugs))) everyone.

                    Comment


                      #11
                      Ok y'all see you on the island soon.

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