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The Journey To Limbo

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    The Journey To Limbo

    Thus far I have no formal diagnosis, however my own self-diagnosis has been slowly converging upon MS. My immune system is historically "aggressive", e.g.I rarely get sick with contagious illnesses, but when I do, my symptoms tend to be both more severe and of much shorter duration than others'. I have several allergies that my immunologist has never seen before (e.g., parsnips, doxycycline). Below is a brief overview of my history with respect to neuro symptoms:


    "Episode 1":
    Neurological symptoms began abruptly for me one morning in March of 2012. I woke to my alarm clock (it was a workday), but I immediately knew something was wrong. My heart was beating incredibly hard... not fast, but pounding in my chest nonetheless. It was hard to think, as if my attention span had shrunk down to a pencil point; I kept blanking and forgetting what I was thinking about. I felt faint and panicky, vaguely as if my blood sugar and/or blood pressure were extremely low, or as if I were just about to have an anaphylactic reaction (been there before).

    Then I tried to pull down the bedsheets, and found that this was a far more complex maneuver than I could convey to my hands. I could not make my hands grasp the sheet and pull it down. I ultimately had to clumsily push it off of me to get out of bed. While I could stand and walk, my knees wobbled horribly, and I needed both hands to navigate the stairs. Getting dressed was nearly impossible, as I repeatedly fumbled with buttons and zippers.

    I had no loss of sensation. Everything felt normal to me, physically. My limbs were not heavy. I just became incredibly clumsy overnight. Things like housekeys and chapstick became unusable to me. And i just felt like something was terribly wrong.

    Naturally, I went to the ER, but the local ER is commonly regarded as "useless", and I tend to retrospectively agree with that assessment. Given my symptoms, I was dismissed without testing with a diagnosis of "panic attack". Since my insurance does not require a referral for a specialist, I set up my own appointment with a neurologist, although this was to be more than a week later.

    By that time, my symptoms had resolved. They lasted about 10 days in total, fading gradually and then one day disappearing altogether. The neurologist saw no symptoms, but did an MRI of the brain (no contrast dye) and an MRI of the neck (with contrast dye) anyway. Both were negative, although (go figure) I had an allergic reaction to the contrast dye.


    "Episode 2":
    Eight months later, in December of 2012, my hands and feet started sweating.

    No other part of me was sweating... after all, it was cold weather... but my hands and feet were producing copious amounts. My socks were drenched every day after work. My hands were constantly wet and slimy. After several days, the sweating intensified to the point that my hands would literally drip if I held them over a table top. The sweat came from the palms and fingers, all the way to the fingertips.

    At the same time that the sweating intensified, my hands and feet began to tingle. It started with my left hand, then spread to my right, then my feet. At first it felt like my fingers were being stuck into lightsockets, and I was being electrically shocked. It hurt. After the first day or two it faded to a constant background tingling, as if I had lost circulation. After that it faded away, as did the sweating, eventually...

    This episode was brought to the attention of my PCP, and he took bloodwork (normal) but no follow-up was considered warranted.


    These days, sometimes I am unsteady on my feet. Sometimes I shake to the point that I can't write with a pen or marker. Sometimes my hands or feet tingle. Sometimes they sweat unusually. There have been a few days this past summer when I was scarcely able to even walk, because my legs wouldn't cooperate. I hid it and shuffled along, but I seriously worried about falling over my own two feet. But then the next week I was fine again. None of the symptoms are ever as intense as the first time that they appeared. I still have days without any symptoms at all, when I feel perfectly healthy, but they are becoming increasingly rare. I have also begun to see apparently random "sparkles" in my vision, if only briefly.

    I suppose I am awaiting "Episode 3" before the doctors investigate this more thoroughly. I have not yet experienced anything that I would characterize as "fatigue", but by the same token, I had Lyme this past summer (diagnosed by rash and blood test) and did not experience any fatigue with that either.

    Thought I would share my story thus far, FWIW.

    #2
    Hello ThunderCloud and welcome to MSWorld.

    I had Lyme this past summer (diagnosed by rash and blood test) and did not experience any fatigue with that either.
    Did you know Lyme Disease can cause Neurological symptoms? Have you discussed your symptoms with the doctor who diagnosed and treated the Lyme Disease?

    There are many conditions which can be similar to MS such as Lyme Disease.

    You may find these informative:
    http://www.msworld.org/forum/forumdisplay.php?f=121
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

    Comment


      #3
      I agree with SNOOPY on this one. You should look into Lyme. Your symptoms do not quite fit with MS. At first it does sound like an anxiety attack, then the sweating really makes it sound like anxiety. That definitely doesn't fit an MS description. However, Lyme disease has some difference in it from MS, and since you just had it one year ago, it may not have been effectively treated. Sometimes a CNS infection with Lyme doesn't show up on a blood test. Sometimes it only shows up on a CSF analysis, or a urine test specifically for lyme. Not all neurologists are up on the urine test. Lyme disease can hide out in your body and be hard to find in testing.

      I hope you find some answers. I am glad your MRIs were negative. That is good news.

      Take care
      Lisa
      Moderation Team
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment


        #4
        Originally posted by SNOOPY View Post
        Hello ThunderCloud and welcome to MSWorld.



        Did you know Lyme Disease can cause Neurological symptoms? Have you discussed your symptoms with the doctor who diagnosed and treated the Lyme Disease?

        There are many conditions which can be similar to MS such as Lyme Disease.
        Thanks. ^_^ And yes, I am aware that Lyme can cause neurologic symptoms, however my symptoms occurred prior to Lyme infection so far as I can determine. I had Lyme this past June. My other symptoms were earlier than this.

        Comment


          #5
          Originally posted by 22cyclist View Post
          I agree with SNOOPY on this one. You should look into Lyme. Your symptoms do not quite fit with MS. At first it does sound like an anxiety attack, then the sweating really makes it sound like anxiety. That definitely doesn't fit an MS description. However, Lyme disease has some difference in it from MS, and since you just had it one year ago, it may not have been effectively treated. Sometimes a CNS infection with Lyme doesn't show up on a blood test. Sometimes it only shows up on a CSF analysis, or a urine test specifically for lyme. Not all neurologists are up on the urine test. Lyme disease can hide out in your body and be hard to find in testing.

          I hope you find some answers. I am glad your MRIs were negative. That is good news.

          Take care
          Lisa
          Moderation Team
          In fact neither episode is consistent with anxiety, taken individually or collectively, but it is somewhat encouraging that they are also atypical of MS. Lyme was only a few months ago (unless it was not the first infection); most symptoms precede this.

          Comment

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