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    a flare of the undiagnosed.

    Hi everyone. Apparently I registered here in 2011 and I'm back!

    My MS symptoms have have occurred on and off for years and a few years ago and finally I was worked up with MRI's, nerve testing etc. which all seemed normal. I would swear that I have MS. Everything started out with right leg weakness and trembling sensation.

    Several years ago I had an very elevated ANA along with rheumatoid factor. Was this lupus, rheumatoid arthritis or ms? Then I was diagnosed with Lyme and treated. My rheumatoid factor has been intermittently elevated through these years and my symptoms have waxed and waned like blurry vision and twitches.

    I've started having symptoms again like muscle twitches and jerking, weakness, overwhelming fatigue, pain, spasticity among other things. And I'm scared. I'm scared of anything that isn't MS and I'd rather not mention the other diseases that scare the crap out of me.

    I'm also a nurse and recently disabled by bipolar disorder. My brain fog, anxiety and depression, etc. make it impossible to work safely. I've also suffered from migraines since I was a small child. I'm currently having a AMOVIG trial which is the latest thing.

    My bipolar seems fairly stable after several years of med trial and error. My history of anxiety make it easy to blame my symptoms on that but this has been a month of ms symptoms again that make me think I'm having a flare of something.

    My NP is amazing and this time she isn't shipping me off to a neurologist and then rheumatologist again. Neuro referred to Rheum and Rheum referred neuro. She's working with me and I can't be happier. She's ordering everything for me and is sending me to a MS specialist *which will take ages to get in. In the meantime we've just done a bunch of labs and are scheduling an MRI again. I feel like she's taking me more seriously. Last time she thought it was too soon to see a specialist.

    I'm here to meet others and learn about their symptoms and experiences. I'm one who does research (nurse) (anxiety, lol) and truly feel something is wrong but I will be happy to be proved wrong...

    Finally, my last trial is having the BRCA 2 mutation along with my mom which makes us extremely susceptible to breast cancer. I haven't had a mastectomy yet but I'm closely monitored at this time and will probably have one in the future.

    I will look forward to meeting you guys and following your stories.

    #2
    Hi Knitter2,

    Were you aware many things can cause symptoms similar to MS, and that there is no symptom exclusive to MS? The Revised McDonald Criteria which is a criteria used in the diagnosis of MS requires all other possible causes for a person's symptoms must be ruled out. Lyme Disease is one of those conditions. Lyme Disease can cause Neurological symptoms such as you have listed.

    The National Multiple Sclerosis Society has information about this:
    https://www.nationalmssociety.org/Sy...ns-to-Rule-Out

    Blood work is used to rule in/out other possible causes for a person's symptoms, including an ANA.

    I wish you all the best in your diagnostic process and I do hope all of your testing goes well.

    Take care!
    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
      Welcome, Knitter!

      Hi, Knitter,
      My "welcome" sounded a bit enthusiastic, but I'm all sorry you've found yourself here. While no one wants to have to join a site like this, you'll find lots of great information and some very knowledgable members.
      Your situation sure does sound complicated, and I understand how frustrating it can be for some to be bounced around between specialists but unfortunately it can be part of the long process of diagnosing or ruling out MS.
      The good news is that you're not only being worked up by a great NP but that you'll be seeing an MS specialist. The specialists have seen it all so they will order many more tests than just your average neuro. Some of the tests I had were for things I have never even heard of and I work in the medical field.
      I absolutely understand some of the other diseases scaring the crap out of you. Some of the things I was worked up for were horrifying. Maybe this is why I am a bit more accepting of having MS than some people. Many of the alternatives were not something I felt I could deal with.
      Like you, I also do research and enjoy learning everything I can. I learned so much during the diagnostic process and found a lot of it fascinating. Maybe when I return to the workforce I'll work for a specialist. Neurology and rheumatology are super interesting.
      “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

      Comment


        #4
        Replying.....don't know why there is a title? Anyone?

        Originally posted by SNOOPY View Post
        Hi Knitter2,

        Were you aware many things can cause symptoms similar to MS, and that there is no symptom exclusive to MS? The Revised McDonald Criteria which is a criteria used in the diagnosis of MS requires all other possible causes for a person's symptoms must be ruled out. Lyme Disease is one of those conditions. Lyme Disease can cause Neurological symptoms such as you have listed. Blood work is used to rule in/out other possible causes for a person's symptoms, including an ANA.

        I wish you all the best in your diagnostic process and I do hope all of your testing goes well.

        Take care!


        The National Multiple Sclerosis Society has information about this:
        https://www.nationalmssociety.org/Sy...ns-to-Rule-Out

        Yes, I'm aware. I'm a nurse so I'm a little educated tho I don't profess to know it all. I do know MS is a diagnosis of exclusion. I know Lyme can have neurological symptoms and we're rechecking that. Supposedly there is no "chronic lyme" disease. They don't believe it exists. It very well may though. My symptoms began in my late 20's and far before my lyme was diagnosed. I'm doubtful I've had it for decades, though. Currently awaiting NOT patiently for the labs we did last week. TY for your reply!!!

        Comment


          #5
          Welcome, Knitter

          I'm also sorry you have to be here.

          I'm interested in your experience with bipolar.

          I've had MS for almost 17 years. It took about seven years before I was on an MS med that was effective for me. During those first seven years, my MS flares we're always accompanied by manic symptoms that landed need on a psychiatric hospital for one to three weeks.

          I was diagnosed with "mood disorder, secondary to MS". Are your manic symptoms concurrent with your MS flares, or is it a separate issue?
          ~ 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.

          Comment


            #6
            thank you!

            Originally posted by IntoDust View Post
            Hi, Knitter,
            My "welcome" sounded a bit enthusiastic, but I'm all sorry you've found yourself here. While no one wants to have to join a site like this, you'll find lots of great information and some very knowledgable members.
            Your situation sure does sound complicated, and I understand how frustrating it can be for some to be bounced around between specialists but unfortunately it can be part of the long process of diagnosing or ruling out MS.
            The good news is that you're not only being worked up by a great NP but that you'll be seeing an MS specialist. The specialists have seen it all so they will order many more tests than just your average neuro. Some of the tests I had were for things I have never even heard of and I work in the medical field.
            I absolutely understand some of the other diseases scaring the crap out of you. Some of the things I was worked up for were horrifying. Maybe this is why I am a bit more accepting of having MS than some people. Many of the alternatives were not something I felt I could deal with.
            Like you, I also do research and enjoy learning everything I can. I learned so much during the diagnostic process and found a lot of it fascinating. Maybe when I return to the workforce I'll work for a specialist. Neurology and rheumatology are super interesting.
            Thank you for the warm welcome. A fellow nurse?

            Comment


              #7
              mania and ms

              Originally posted by Mamabug View Post
              I'm also sorry you have to be here.

              I'm interested in your experience with bipolar.

              I've had MS for almost 17 years. It took about seven years before I was on an MS med that was effective for me. During those first seven years, my MS flares we're always accompanied by manic symptoms that landed need on a psychiatric hospital for one to three weeks.

              I was diagnosed with "mood disorder, secondary to MS". Are your manic symptoms concurrent with your MS flares, or is it a separate issue?
              Hi!

              I don't really have a lot of mania now, maybe a little hypomanic at times but nothing too bad. I don't really see a correlation with the ms symptoms.

              Actually, now that I think about it....I went away just before this flare. I was probably hypomanic as I was kid free and spending money. Very up. Mania is common when traveling apparently. When I got home I was suddenly exhausted. We didn't do anything very taxing so I wondered if I was suddenly "coming down" from a bit of hypomania. My symptoms have worsened since then.

              Interesting to note! I'm sorry you landed in the hospital. That stinks.

              Comment


                #8
                Originally posted by knitter2 View Post
                Thank you for the warm welcome. A fellow nurse?
                No, just a medical assistant/scribe who once had aspirations to become a PA. I don’t think I’ll pursue it at this point. Starting at 35 is enough of a gamble, but I couldn’t imagine making it through my bachelors degree and a PA program with the way I’ve been feeling. (Worst symptom is constant fatigue). It’s not just the time invested but the financial risk at this point.
                “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

                Comment

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