Inconclusive Does Not Mean Nothing Is Wrong

Inconclusive Does Not Mean Nothing Is Wrong
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While Rare Disease Day events spanned the globe, I came across paperwork that reminded me of how difficult it was to have my Lambert-Eaton myasthenic syndrome (LEMS) diagnosed.

For close to a decade, I had occasional numbness on my face. The muscles in my back were in constant spasm, and I couldn’t attempt to start an exercise plan without my body rebelling, sending me to bed sick for days on end.

Any amount of walking would cause extreme pain in my feet. When I was driving throughout my territory as a pharmaceutical sales rep, I couldn’t walk by the end of the day. I thought the weakness I felt was because of the extreme leg pain. When I’d wake up in the morning, I barely made it down my stairs because the pain was even worse. I would hang onto the stair railing for dear life.

My husband would jokingly say we needed to install one of those electric chair lifts to zip me up and down the stairs.

It was during this time that I also had occasional zapping feelings that were like electric shocks down my spine.

My hips would freeze. If I sat on the ground on a hard surface, there was no chance of getting up. When I sat on the arm of the couch with my hips off-kilter, they would freeze that way. Standing up again was agonizing.

In 2004, I was diagnosed with fibromyalgia. The rheumatologist ordered hip X-rays to check for arthritis, but none was found. I was prescribed fibromyalgia meds, which brought no relief. When I complained about dry mouth and eyes, I was told it was a side effect of the fibro meds.

About 10 years ago, things escalated in the hospital emergency room. I had a facial droop that sent me for my first brain MRI. They tested the feeling in my legs, and when I said one side felt more of the needle prick than the other, they asked how long that had been going on. “I don’t know. That’s the first time anyone has ever done that test on me.”

Then came the doctor’s shock when he felt my back muscles. “It feels like you have rocks in there.” Nothing was relieving the muscle spasms in my back. It was attributed to my spinal surgery. My muscle relaxant prescription was increased to the strongest available — baclofen is typically prescribed for spasticity in ALS.

The results of that first MRI sent me to see my first neurologist. She checked for multiple sclerosis based on my symptoms, but my lumbar puncture was inconclusive. Then she ordered an evoked potentials test to see where along my spinal pathway the message was being disrupted.

That was in 2013.

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Dawn DeBois keeps her sense of humor during her evoked potentials test in 2013. (Courtesy of Dawn DeBois)

She said the test’s result was “inconclusive due to the Harrington rod” in my back. Once again, my back became the reason for everything happening to me. She told me to come back if things got worse.

Things did get worse when I was prescribed Plaquenil (hydroxychloroquine) for my psoriatic arthritis. My LEMS symptoms flared. My legs were heavy. My face felt like I had a numbing spider going across it, and I felt like I was wearing a weighted vest. I could barely hold my head up. My employer wasn’t impressed when I called in sick with invisible symptoms.

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Dawn says wearing a vest for X-rays is what her LEMS felt like prior to treatment. (Courtesy of Dawn DeBois)

When I reported the weird side effects to my rheumatologist, she immediately told me to stop the medication and to see my neurologist. My former neurologist had left, and I thankfully met my own version of Dr. House.

When I read my evoked potentials results last week, the words that stood out were “abnormal results” and “delays can be caused by a variety of neurological conditions which may be associated with the neuromuscular etiologies of scoliosis.” All of my suffering with an undiagnosed rare disease could have been alleviated much sooner.

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The results of Dawn’s evoked potentials test were not inconclusive but pointed toward neuromuscular disease. (Courtesy of Dawn DeBois)

The evoked potentials test, nearly four years before my LEMS diagnosis, was not inconclusive. It pointed toward a neuromuscular condition. But the neurologist stopped there, and I suffered for more than 10 years with horrible symptoms without a diagnosis.

Not finding expected results on a diagnostic test does not equal inconclusive. If any doctor tells you a test result is inconclusive, ask them, “What test is next?”

***

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.

When Dawn was diagnosed with Lambert-Eaton Myasthenic Syndrome in 2016, she realized how lonely it was not having anyone to talk to that understood her illness. Her goal with ‘LEMme Tell Ya’ is to let that be a conversation about LEMS that other patients can look forward to each week. Dawn will share her own stories of being a LEMS patient and one who also deals with having an invisible illness along with multiple autoimmune diseases. Dawn’s prior work experience in pharmaceuticals and public health education is what led to her desire to educate others about her ultra rare diagnosis of LEMS. This desire, combined with her love of writing, led to her blog, The Battle Within. Dawn is also a contributor for TheMighty.com. When able to, Dawn volunteers for various pet rescue organizations. She has three adult sons and resides in Maine with her own rescues: a pug, Rocky, a beagle mix, Anna, and two cats, George and Wylie.
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When Dawn was diagnosed with Lambert-Eaton Myasthenic Syndrome in 2016, she realized how lonely it was not having anyone to talk to that understood her illness. Her goal with ‘LEMme Tell Ya’ is to let that be a conversation about LEMS that other patients can look forward to each week. Dawn will share her own stories of being a LEMS patient and one who also deals with having an invisible illness along with multiple autoimmune diseases. Dawn’s prior work experience in pharmaceuticals and public health education is what led to her desire to educate others about her ultra rare diagnosis of LEMS. This desire, combined with her love of writing, led to her blog, The Battle Within. Dawn is also a contributor for TheMighty.com. When able to, Dawn volunteers for various pet rescue organizations. She has three adult sons and resides in Maine with her own rescues: a pug, Rocky, a beagle mix, Anna, and two cats, George and Wylie.
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8 comments

  1. Rafael Flores says:

    Hola!!! tu relato me recordó casi exactamente lo vivido con mi hijo para poderle diagnosticar el LEMS.vivimos en Venezuela y no teníamos diagnóstico, luego viajamos a Bogotá-Colombia donde le hicieron todas las pruebas y el resultado fue no concluyente, después enviamos la biopsia muscular a Hopkin en Baltimore-USA y me llamaron luego para decirme que los resultados también eran no concluyentes. Finalmente fuimos al Hospital San Joan de Deu en Barcelona-España donde el equipo del Dr. ANDRES NASCIMENTO diagnostico la enfermedad. Tuvimos que esperar dos años para que nos dieran un diagnóstico definitivo. En ese entonces, mi hijo contaba con 15 años.

    Translation VIA Google Translate:
    Hi!!! Your story reminded me almost exactly what I lived with my son to be able to diagnose the LEMS. We lived in Venezuela and we had no diagnosis, then we traveled to Bogotá-Colombia where they did all the tests and the result was inconclusive, then we sent the muscle biopsy to Hopkin in Baltimore-USA and they called me later to tell me that the results were also inconclusive. Finally we went to the San Joan de Deu Hospital in Barcelona-Spain where Dr. ANDRES NASCIMENTO’s team diagnosed the disease. We had to wait two years for a definitive diagnosis. At that time, my son was 15 years old.

    • Dawn DeBois says:

      Wow. How is your son doing now?

      Translation to Spanish via Google translate:

      Guau. ¿Cómo está tu hijo ahora?

      • Rafael Flores says:

        En estos momentos tiene 19 años. Se mudó a Sevilla-España buscando una mejor condición de vida ya que en Latinoamérica es muy difícil vivir con este tipo de condición. Actualmente se encuentra estable, esta tomando 3.4 Diaminopiridina y la próxima semana le van a realizar una plasmaferesis por primera vez. Lamentablemente aún en España no administran la inmunoglobulina subcutánea como en USA. Algunos días son difíciles para el; ya que sus energías y rendimiento le dan solo para media jornada.

        Google Translate Edit:

        He is currently 19 years old. He moved to Seville-Spain looking for a better life condition since in Latin America it is very difficult to live with this type of condition. He is currently stable, he is taking 3.4 Diaminopyridine and next week they will perform a plasmapheresis for the first time. Unfortunately, even in Spain, they do not administer subcutaneous immunoglobulin as in the USA. Some days are hard for him; since its energies and performance give it only for part-time.

        • Dawn DeBois says:

          He should feel great benefit from plasmapheresis! I’m sorry they don’t have IVIG as an option there. It has been extremely beneficial for me! I live where it is very cold – the state of Maine- and struggle in the summer, so I can’t imagine living where it is so much hotter while having LEMS! Best wishes for his treatment to be very helpful!

          Google Translate to Spanish:
          ¡Debería sentir un gran beneficio de la plasmaféresis! Lamento que no tengan IVIG como una opción allí. ¡Ha sido extremadamente beneficioso para mí! Vivo donde hace mucho frío, el estado de Maine, y lucho en el verano, ¡así que no puedo imaginar vivir donde hace tanto calor mientras tengo LEMS! ¡Mis mejores deseos para que su tratamiento sea muy útil!

  2. Rafael Flores says:

    Mis mejores deseos también para ti. Gracias por compartir tu condición con nosotros.

    Google Translate:

    My best wishes also to you. Thank you for sharing your condition with us.

    • Dawn DeBois says:

      I apologize it took me a few days to answer your prior questions about IVIG. I was dealing with a migraine. I wish your son the best! Please consider joining us in the Lambert-Eaton news forums as well!

      Google translate:

      Pido disculpas, me tomó unos días responder sus preguntas anteriores sobre IVIG. Estaba lidiando con una migraña. ¡Le deseo lo mejor a tu hijo! ¡Por favor considere unirse a nosotros en los foros de noticias Lambert-Eaton también!

  3. Rafael Flores says:

    Corrijo; mi hijo me comentó que le van a realizar es Ivig. Será su primera sesión. Esperamos sea beneficiosa. Su médico nos comenta que solo 50% de los pacientes tienen resultados positivos con la terapia. Que puedes recomendarnos para evitar efectos secundarios o sea de mayor provecho la terapia??

    Google translate:
    I correct; My son told me what they are going to do is Ivig. It will be your first session. We hope it is beneficial. His doctor tells us that only 50% of patients have positive results with therapy. What can you recommend to avoid side effects or therapy is more useful?

    • Dawn DeBois says:

      For some it takes many treatments of IVIG to gain the full benefit. To minimize side effects- hydration is essential. I take benedryl and tylenol as well as zofran (which helps with the nausea that can happen sometimes). I keep taking tylenol and benedryl until my body has recovered from the treatment and that keeps the symptoms under control. Also, making sure they do an extremely slow flow rate to the infusion helps. For me, once the side effects went away, I felt SO much better than before my treatment that it made the side effects worth it.

      Google Translate:

      Para algunos, se necesitan muchos tratamientos de IGIV para obtener el beneficio completo. Para minimizar los efectos secundarios, la hidratación es esencial. Tomo benedryl y tylenol, así como zofran (que ayuda con las náuseas que pueden ocurrir a veces). Sigo tomando tylenol y benedryl hasta que mi cuerpo se ha recuperado del tratamiento y eso mantiene los síntomas bajo control. Además, asegurarse de que hagan un flujo extremadamente lento a la infusión ayuda. Para mí, una vez que los efectos secundarios desaparecieron, me sentí mucho mejor que antes de mi tratamiento que valió la pena.

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