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Trying to stay calm through the calamity

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    Trying to stay calm through the calamity

    I'm new here to MS World and am in limbo. While I'm not hoping to be given the dx of MS, I am hoping for answers to the symptoms that plague me. I'm 45y/o and I've been a nurse (traveling) for over 20yrs and I'll be the first to admit that I'm a horrible patient.

    In 2014 I had an episode in which I lost sensation in both of my legs. That was followed by an ongoing tingling sensation in my right leg. I resided in Arizona at the time and was referred to a Neuro who performed an EMG who suspected MS after a MRI showed 3 areas in my brain and a large one on my T-Spine. Shortly after the procedure I moved back to the Midwest, where I'm from, and never got the results of the EMG. I never had problems again so I put it on the back burner. (Other than the tingling in my right leg)

    Fast forward four years (to the month) I'm living in the PNW. Aside from my reports to my PCP that, "sometimes my legs feel heavy like they don't want to work" and the tingling sensation, I've really had no complaints. I have had 2 episodes where I felt dizzy and did have a syncope episode one of those times. I felt it may be cardiac related since both times by BP was extremely low (80s/40s)

    Then last month something different happened. I was driving home from work when I got extreme vertigo. My entire essence felt floaty? like I was slipping away. I made it home and sat down on the couch to elevate my legs. The dizziness was profound. It's just my 14y/o son and myself so we have a plan in place should anything happen to me since we have no family here.

    Anyway.. I told him something was wrong and told him to call his sister back home. My right side felt weak but also both of my legs. While talking to my daughter my speech became garbled. The call was placed to 911. When they arrived my BP was extremely elevated and I had right arm drop. I had the garbled speech and it was as if my brain wasn't connecting to my mouth, difficulty trying to put my thoughts into words.

    They transported me to the hospital where a stroke code was called. I lost my ability to speak completely en route. I knew what was happening, or so I thought, and I was terrified. My scan was negative but due to my presentation the ER doc made the call to give me TPA. 40min into the 60min infusion my speech came back but garbled. My legs were still still heavy almost like they weren't there. At that point I thought the scan missed something and raved that TPA really is a miracle drug.

    They kept me in Neuro ICU for 2days. My speech came back completely. My legs, while still weak, worked. They had no answers to what happened to me other than... "conversion". That made me sad. This wasn't a psychosomatic thing... something was happening inside my body. I felt it.

    3weeks later I had another episode. Same as the prior, weekness on the right yet both legs-floaty-inability to connect my brain to my mouth-extreme vertigo while horizontal-garbled speech-elevated BP. I had had nearly constant headaches since the first episode 3weeks prior (and still do) The only thing different this time was I experienced something like a seizure. I had tremors and my eyes were darting. In the ambulance I attempted to tell the paramedic that I was being followed by a cardiologist and he responded with, "you think there is a cardiologist behind us following you"? I said... nooo, I'm under the care of a cardiologist.

    Once again they called a stroke code. I told them I was treated with TPA 3weeks prior at a different hospital (the one they were supposed to take me to) After being left in the room alone for nearly an hour (after calling the code?) the nurse came in and said, "you didn't get TPA 3weeks ago, I just got off the phone with the hospital". Uhhhhh, yes I did. I told her the fire dept sent my discharge paperwork, "it's right over there and says TPA". I felt like I was in the twilight zone. Nothing was making sense. My symptoms were improving again but not resolved and everyone was treating my like I was crazy. I was angry. At my body. At them. I insisted on going home.

    Since then I have followed up with my cardiologist who has cleared me from a cardiac standpoint. And who felt horrible when she reviewed the notes from my recent ER visit stating, "I believe something is happening as well". I have followed up with my PCP who also believes me and felt horrible that I was treated so poorly. All the blood work is back and all negative. No B12 deficiency, no MG, no syphilis.

    The referral to a Neuro has been made and I did my research choosing one who specializes in MS. My appointment is on the 31st. What frightens me the most at this point is not knowing when the "episodes" could strike again. They were so scary. What if I'm driving and hurt someone. I have decided that I will NOT be calling 911 again. I refuse to have anyone treat me like I'm a whacko. I'm intelligent and I know my body and what's happening to it can't possibly be psychosomatic. I'm sad because I feel fear. I'm trying to navigate through all of my symptoms without isolating and doing my best to stay optimistic. Some days are just harder than others..

    My apologies for the rant. If you could send me some positive thoughts that would be great At this point I think it'll almost be worse to hear another negative result.. the idea that maybe they're right and it is in my head.. that might be enough to break me completely. Thank you for this community and for all the stories of hope, unity and compassion.

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Hi Calamity and welcome

    Thanks for sharing your story up to this point.

    Sorry for what you've been going through with the sudden onset of symptoms - I would feel afraid too. And it doesn't help to have others doubt your experiences.

    Originally posted by Calamity View Post
    In 2014 I had an episode in which I lost sensation in both of my legs. That was followed by an ongoing tingling sensation in my right leg. I resided in Arizona at the time and was referred to a Neuro who performed an EMG who suspected MS after a MRI showed 3 areas in my brain and a large one on my T-Spine.
    Aren't any of the doctors taking into consideration your MRI findings?

    In any case, glad to know that you have an appointment with a neuro who specializes in MS. It may or may not be MS, but your neuro should be able to figure out the cause of your symptoms.

    You are welcome to rant here all you need to.
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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      #3
      Here's some of my hx, but keep reading if the beginning discourages you. There is definitely hope that things will get better.

      My MS initially presented with stroke-like symptoms. I lost the use of my left side. Noticed it in the middle of the night. Called 911. CT scan was done that night. MRI the next morning, following a hospital admission.

      For about 3 months, doctors assumed that I had likely had a stroke, even though i was only age 39 was no family hx of stroke. But, even right from the start, they said "lots of things can mimic a stroke", and MS was considered.

      Three months later, I had another neurological incident, with totally different symptoms -- manic, etc. Neither stroke-like symptoms or mania are typical for MS, but, also not unheard of. Another ER trip; another hospital admission. Lots and lots of testing was done and many illnesses were ruled out. MS was still being considered, but there was not enough evidence for a dx.

      Two months later, I had not recovered well from the second incident. Although the manic symptoms were gone, my physical symptoms continued to get worse, short term memory was bad, I was sleeping 16 - 20 hours per day, I'd been off work for months. Went to Mayo clinic in Rochester, MN. Lots and lots and lots of tests. Every day. For two weeks. Still no accurate dx. "Probable CNS Lupus, but we're not ruling out MS."

      Over a year later, after a few more flares, a total of 7 MRI's and I don't know how many other tests, I was dx with MS.

      I don't know if my story is too negative. I understand that you are requesting positive results. The positive result is that, eventually, I was diagnosed and was put on meds. The MS meds help to decrease the fx of flares, decrease the severity of flares, and to delay the progress of the disease.

      The other positive information is that the meds are much more effective now at doing those things than they were 17 years ago when my journey with MS began. And, because different meds are effective for different people, hopefully doctors are quicker now to change you to a more effective med than mine was, when my first med did not work very effectively. You also have many more choices about meds -- there were only 4 choices when my MS was dx.

      My advice would be to find an MS Specialist, rather than just a general neurologist. A specialist can likely help to find a diagnosis more quickly, or at least to rule out MS if MS is not what is causing your symptoms. Your general practitioner should be able to give you a referral to an MS Specialist if you ask. I drive 3 hours, one way, twice a year, to visit my MS Specialist. It is more than worth the time and effort because of the extra knowledge and experience that she has, specifically with MS. And, hubby and I make a mini-weekend vacation out of it each time we go and stay overnight, rather than driving up and back in one day.
      ~ Faith
      MSWorld Volunteer -- Moderator since JUN2012
      (now a Mimibug)

      Symptoms began in JAN02
      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
      .

      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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