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Calling all limbo-landers limbo check in 10/4/2011

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    #16
    Hi to all.

    MVM I would be screaming as well. UGH. I have dealt with Dr's at Emory for my MIL and they made me want to scream as well. She needed surgery for a hernia that had kinked her bowel and she couldn't eat anything for months. Was living off of soup. From the time we first saw the DR to surgery was over 3 months. I thought that was ridiculous!!! She was wasting away to nothing!

    Limbo is so frustrating. The first 6 months I was so upset that they thought I had some auto immune disease but didn't know what it was. Initially they thought it was MS then I had a low positive ANA so Lupus was the talk.

    It made me a nervous wreck but as time has gone by I have relaxed and after a year has gone by with continued symptoms (new and old) waxing and waning. I have found peace. I personally believe that God will bring it all together in his time. I have to rest in that.

    Currently MS is the only possibility on the table for me. All other possibilities have been ruled out. That part of things drove me nuts all the testing. I must say that I am glad to be here for now. From my understanding they are waiting for another flare or new lesions. So I wait......

    My struggle right now is balance . Because when I feel good I want to do everything that needs be done, and I do so. Then I end up with crushing fatigue and nothing gets done. So if any of you have any ideas how to balance this. I would be greatful.

    ((Hugs to all))
    Lori
    Limbolander.... Lori
    This is the day the Lord has made I will rejoice in it!

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      #17
      maitrimama-realized just now I addressed a comment to minivanma and you were the one talking about seizures.I am so sorry.these duh moments are my new norm.It is one of the things I hate so much.Memory and cognitive abilities are messed up again so sorry!

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        #18
        15 Second Delay

        I feel like my memory now has a 15 second delay like they have on tv and radio because it takes me about that long to get my thoughts together and find the right words. Thank goodness I can laugh at myself...some of the time.

        And some times I just want to cry (and it isn't even 9am). Am I the only one who thinks the days seem soooo long, waking up and wishing it was time to go to bed?
        M.
        A question that sometimes drives me hazy: am I or are the others crazy?
        Albert Einstein

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          #19
          RE: Still in Limbo Land

          I had an appointment to see my neurologist (who had run tests three years ago due to similar symptoms) and two days before the appointment, his office called to cancel it. They offered to reschedule for a month later, which I took. I was really upset, as I'd put a lot of hope into that appointment somehow fixing everything (unrealistic, I know).

          Since then, I have seen the doctor who takes care of my back issues. We talked about everything that is going on and I asked him if this is possibly all due to a slipped (or ruptured, or whatever) disk. He told me with complete certainty that it wasn't. He repeated, almost verbatim, what I had been told by my PCP, that he can't diagnose me with MS but he believes that is what it is. He also told me to not bother with the neurologist right now, as my drop foot is much improved and he doesn't think they could do anything anyway. He prescribed Baclofen (PRN) for the muscle crams that I get in my calf.

          I'm still going to go in to see the neuro, if nothing else than to re-establish care. My back Dr. gave me the name of one that he thinks is better than the one I had planned on seeing. In a way it is comforting to see that other people understand how frustrating this is, but I am so sorry that so many of us are in this place. I hope that answers aren't too far off for everyone.

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