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    • #19219
      Todd Fringer
      Participant

      <p style=”text-align: left;”>Hi, I need clarification:.</p>
      <p style=”text-align: left;”>1) if I tested positive for LEMS antibody with high levels, does that mean I have LEMS? </p>
      <p style=”text-align: left;”>2)  can you test positive for the antibodies but not have LEMS</p>
      I really need confirmation so somebody please answer. If you will provide published proof it would be greatly appreciated.

    • #19220
      Price Wooldridge
      Moderator

      @cowboytodd HiTodd. You don’t say which antibodies are high. Some LEMS diagnosed patients have “N”, others “P/Q”. I can only speak to my personal experience.
      My bloodwork was sent to the Mayo Clinic lab in Rochester. My P/Q antibodies tested high. Here is their exact wording with the result. “In an appropriate clinical and electrophysiological context, this antibody profile would be consistent with Lambert-Eaton myasthenic syndrome”.
      My neurologist had already done an extensive verbal clinical history with me and an in-person physical exam. She diagnosed me the day she got those blood results back. Subsequently, I came in shortly after and did a single-fiber EMG (Electromyogram) with her which was confirming.
      I believe there is wiggle room on the diagnosis if you don’t meet all of these criteria.

    • #19222
      Todd Fringer
      Participant

      Hi Prince, thanks for the reply and explanation. I’m a disabled veteran receiving care through the VA. Currently an inpatient at the Minneapolis VA Hospital for unexplained muscle weaknesses. My Neurologist have never had a LEMS case at this VA. Diagnoses complicated because I’m a high level incomplete (C1) Quadreplegic but can move legs & left arm, currently not walking. Also had stroke with service injury and TBI. Unfortunately I don’t have my specific antibody levels from VGCC test. I’ve requested so hopefully i can get them. I had EMG (neg for LEMS standard) although I’m unsure if results are valid because of the extensive nerve damage and nerve response i have. Again a question I can’t get a definite answer to.

      After positive for LEMS in July, i was put on a trial 3,4 DAP which had excellent results. For 5 weeks my muscles worked as per my normal, then I contracted pneumonia. For the 4 weeks of pneumonia treatment and 3 weeks after the 3,4 DAP was not affective. Now because its not helping, Neuro said I don’t have LEMS and they don’t know why my muscles don’t work at times.

      Very frustrating. I’ve researched for hours trying to find the answers. What I do know is my body. One thing I’m sure of is there’s days that I can’t touch my face or stand up which is opposite of my normal ability.

       

       

      • #19224
        Price Wooldridge
        Moderator

        @cowboytodd Todd, you have a complicated picture. One of my good friends owns a high level prosthetic company in Oklahoma who frequently works with veterans. Talking with him I’m learning more and more what can and can’t be done. I hope the VA is doing all they can for you. As a comparison, I’m in the VA Healthcare System in Dallas, I think the biggest system in the VA. We have only one neuromuscular neurologist and she only comes in two days a week to the VA. It would be very easy for me to have seen a neurologist who had no familiarity with LEMS. I got lucky.
        My take is the key to ruling out LEMS (since you did respond well to 3,4 DAP) is to get the LEMS blood test. This is the VGCC antibodies test, sent off to the Mayo Clinic lab in Rochester, NY. My neurologist knew to order this, and the VA sent it. If you have high antibodies that could make a case for further investigation.

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