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    Limbo Bites

    Hi everyone.

    Let me start with kudos to everyone that is struggling to officially find out what it is that is making them feel "not right" in one way or another (or several).

    I am super new to limbo and am already frustrated as it has resulted in my inability to work. I drive city transit bus and had my license pulled due to vision and vertigo issues among many other issues that wouldn't necessarily affect my ability to drive.

    At this point I have only one regret and that is that I haven't been keeping records of symptoms and time frames etc...As a typical woman and Mom I have spent the last 2 years brushing off, ignoring and excusing different symptoms as stress.

    Aside from the lack of control in figuring this out and the constant state of waiting for appointments, waiting for results, waiting for the next good day followed by waiting for the next bad day and then the next really bad day.

    Stuggling with symptoms that can't necessarily be seen by others and that feeling that family and friends (and my employer) don't really understand why I'm off work. I look capable of working and doing all the normal things I would do daily.

    Feeling guilty that I can't teach my daughter to drive without impeding on a friends schedule. Guilt for having to move myself, 2 kids and 3 pets into my Moms apartment because I can't afford to live anywhere while on sick benefits and an uncertain financial future.

    This process is going to take so much longer as I live in a smaller city with limited specialists and long wait times for appointments. Almost hoping for a serious event to force an MRI or some other testing to get some answers.

    I don't know which will be worse, finding out there is something seriously wrong, a disease, or some other condition or finding out there's nothing wrong and being left wondering what all these symptoms are and why I'm having them.

    Ugh. I really don't know how some of you have managed to stay sane for as long as you have. It's only been 2 months since I had my license taken away.

    #2
    Hi LibraAngel74.

    Fellow Libran, but not sure I can claim the Angel part!!

    I can imagine how frustrated you are. I lost my license once for 6 months due to a weird cognitive issue, which was immediately followed by vertigo and optic neuritis. For me, an inconvenience once I recovered. But for you, it is your livelihood. Totally different impact.

    My diagnosis was 13 years later, but I didn't have much in the way of symptoms and wasn't followed by MRIs. So I wasn't in limbo. But many here have been.

    I know how frustrating the "invisible symptoms" are. If I hear one more time "but you look so good". I have to remind myself most people mean it as a complement and are trying to understand.

    I hope you get answers soon. We can always deal once we know, but the wait to find out is a test of our nerves.

    Glad that you do have your Mom local to help out. I know not ideal, but it is a huge aid. Your girls get to spend some extra time with their grandmom.

    Have you had MRIs or still waiting?
    Kathy
    DX 01/06, currently on Tysabri

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      #3
      Hey Pennstater,

      We're all angels, Librans especially, just some of us might have a more tarnished halo than others lol.

      No I haven't hit the MRI stage yet. Still testing w everything else first. I'm not sure if, how or when I should suggest or ask if some of these symptoms could be connected or part of a bigger problem. Right now we are breaking down individual symptoms. One. At. A. Time. So arguous and wait times to see an Opthmologist and E.N.T. are months long.

      Requesting a Sleep Study as I'm back in a cycle of Apnea of some sort. Waking up choking, feeling like I'm a drowning and just for fun it's worse right now as I have a sinus cold. Love that post nasal drip.

      I hate all the unanswered questions and having no control over how I feel from day to day.

      I'm so glad all my kids are grown (2 boys, 1 girl) and that I have my Mom. I don't know how I'd manage somedays without her and if my kids weren't self-sufficient.

      And like I said, I don't want it to be something but if it is I'd like to know so I can start fighting or fixing and get back to being me.
      Last edited by KoKo; 10-11-2018, 02:00 PM. Reason: corrected spelling of Pennstater

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        #4
        Side note.

        Sorry Pennstater...auto correct apparently didn't want to accept that as your name lol. And I can't figure out how to edit threads or if we even can.

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          #5
          Originally posted by LibraAngel74 View Post
          Side note.

          Sorry Pennstater...auto correct apparently didn't want to accept that as your name lol. And I can't figure out how to edit threads or if we even can.
          LibraAngel74 ~ Fixed!

          If you ever need editing done to your post, just email BoardModerators@msworld.org.

          Take Care
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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            #6
            My Suggestion for You...

            Originally posted by LibraAngel74 View Post
            At this point I have only one regret and that is that I haven't been keeping records of symptoms and time frames etc...As a typical woman and Mom I have spent the last 2 years brushing off, ignoring and excusing different symptoms as stress.

            I did the exact same thing for years. I didn't brush them off as stress but I did laugh them off and attribute them to "Everything goes downhill after 30!". It stopped being funny when I lost a lot of vision in one eye. It was after I saw all of the symptoms of MS listed that I had an "Ah ha!" and "Oh crap!" moment - except 'crap' was not the word that I used when I realized what was going on.
            It was only after seeing both a neurologist and an MS specialist for 15 months that I sat down and made a timeline of my symptoms. I was sick of forgetting to mention certain things or having my concerns brushed off. I wanted them to see the whole picture as I did. I spent a lot of time making a list of any and all unexplained health issues I've had (luckily this list was pretty geared towards neurological issues as I'm otherwise crazy healthy). I then added the months and years in which they happened. I did this by remembering what was going on in my life as these symptoms were happening. Luckily I remembered approximately how long each symptom lasted and I included that to, using asterisks to make note of which symptoms were a one-time event, which recur and which have been constant. When used in conjunction with the MRI, VEP and OCT results it was obvious that there was no other better explanation for my symptoms for MS. I also learned that my flares tend to happen in the Sumer months.

            Originally posted by LibraAngel74 View Post
            I'm not sure if, how or when I should suggest or ask if some of these symptoms could be connected or part of a bigger problem. Right now we are breaking down individual symptoms. One. At. A. Time.

            Breaking down individual symptoms is fine, whether or not you are ultimately diagnosed with MS as it's better than having every single issue blamed on the disease. But, as I told you above, sometimes it takes seeing all of the symptoms together to help your doctor put the pieces together.

            My suggestion is to make a list of your symptoms, hand it to your doctor/neurologist and say, "I don't know if any or all of these things are related, so I'm going to need you to sort all of this out for me. What disease/diseases can cause most or all of these to happen?"
            Im pretty and tough, like a diamond. Or beef jerky in a ball gown. - Titus Andromedon

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              #7
              Thanks IntoDust

              I have started keep track of current symptoms and flare ups along with my food journal.
              A letter describing all my symptoms and general timeframes and level of recurrence is what got me here.
              As it stands right now I have virtually zero iron in my blood, which can explain or justify several symptoms. I am going into the hospital tomorrow for intravenous iron injections. I have 3 doses, one every 2 weeks. And then we wait and see if it holds. If it does, then we may have to re-evaluate any symptoms that remain and continue evaluating the unrelated symptoms.
              Thanks for the advice...I think I will sit down and try to be more specific in the details to make future symptom exploration easier.

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