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LUCIA

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@luciag

A mi lo primero que me recetaron fue el firdase pero en España no había laboratorio y en la Farmacia del Hospital Fundación Jiménez Díaz de Madrid me hicieron la fórmula magistral y este tratamiento en España lo financia el hospital. Si no, no hubiera podido ni pagarlo ni seguir adelante. Todos los sintomas de libro, debilidad muscular, fatiga […] View
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  • Profile picture of LUCIA

    LUCIA replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 1 month ago

    @pricewool Compañeros. Hay un zoom el dia 19 a las 5 de la tarde. Tengo una duda importante, los que somos españoles y no entendemos inglés hay algun modo de traducción. Vais a poner los chats de modo que podamos traducir esta esperada reunión. Gracias, espero vuestras respuestas. Un abrazo,

    Translation: Companions. There is a zoom on the 19th…[Read more]

  • Profile picture of LUCIA

    LUCIA replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 1 month ago

    Muchas gracias por preguntarme…
    Hola. Pues lo hablé con el neurólogo y me dijo que él iba a contactar con una neurologa que se llama Beatriz, experta en epilepsia, y que hace años me trató. Es época de verano y a lo mejor se dilata mas la cita pero estoy esperando para ver su opinión y si me hace una monotorización para encajar la medicac…[Read more]

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    LUCIA and Profile picture of MorganMorgan are now friends 1 month, 2 weeks ago

  • Profile picture of LUCIA

    LUCIA replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 1 month, 2 weeks ago

    Pues regular nada más. Cada vez tengo más momentos de debilidad y este fin de semana he tenido momentos angustiosos. Perdi el conocimiento comiendo y según mi marido hice algunas cosas de andar y darme con muebles, cosas de las que no me acuerdo absolutamente nada. Hablé contigo de las convulsiones y epilepsias y me comentaste que podrían ser prov…[Read more]

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    LUCIA and Profile picture of Sandra GüntherSandra Günther are now friends 1 month, 2 weeks ago

  • Profile picture of LUCIA

    LUCIA replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 1 month, 2 weeks ago

    Bueno, tambien me acomodo al dia 19, por mi bien.

  • Profile picture of LUCIA

    LUCIA replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 1 month, 2 weeks ago

    A mi el 12 de julio me viene bien

  • Profile picture of LUCIA

    LUCIA and Profile picture of Dorothy DempseyDorothy Dempsey are now friends 2 months, 2 weeks ago

  • Profile picture of LUCIA

    LUCIA and Profile picture of Desiree TaliancichDesiree Taliancich are now friends 2 months, 2 weeks ago

  • Profile picture of LUCIA

    LUCIA replied to the topic Seeing a New Neurologist in the forum Diagnosed- What now? 2 months, 2 weeks ago

    Hola Desiree, me interesa mucho lo que te diga este nuevo neurologo y el control actual por un reumatólogo paralelamente. A mi esto no me lo han propuesto y considero una idea que debiera estar presente en todos los casos de lems y acotar los síntomas para evitar la producción exacerbada de anticuerpos. Seguiré tus informaciones y te deseo que sea…[Read more]

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    LUCIA and Profile picture of Ashley GregoryAshley Gregory are now friends 2 months, 2 weeks ago

  • Profile picture of LUCIA

    LUCIA posted a new activity comment 2 months, 2 weeks ago

    Hoy tambien me he puesto en contacto con un grupo de wassa españolo de 6 personas que me van a ser de muchísima ayuda y dios quiera, si tengo fuerzas, que yo sea tambien de ellos y nos animemos, todos los dias pasa algo, a veces sospechoso y contar con todos vosotros, créeme, lo mejor que me ha pasado en años. Tengo apoyo de mi familia pero no cre…[Read more]

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    • Profile picture of Ashley Gregory
      Ashley Gregory replied 2 months, 2 weeks ago

      Translated:
      Today I have also contacted a group of Spanish wassa of 6 people who will be very helpful and God willing, if I have strength, that I am also theirs and we are encouraged, every day something happens, sometimes suspicious and count on all of you, believe me, the best thing that has happened to me in years. I have support from my family…[Read more]

    • Profile picture of Ashley Gregory
      Ashley Gregory replied 2 months, 2 weeks ago

      Translated: It’s great to know that you’ve found a group of 6 people you can count on to receive support and listen to you. In addition to the close family, it is good to have others who understand.

  • Profile picture of LUCIA

    LUCIA posted a new activity comment 2 months, 2 weeks ago

    Muchísimas gracias por tus palabras de aliento y por aceptar mi amistad. Este foro es el refugio mejor que se puede encontrar. Entendemos a todos porque estamos en el mismo camino. Hoy estoy un poco preocupada porque llevo meses de dolores desde mi ultima operacion de columna a veces insoportables. Me hicieron un TAC la semana pasada y tengo…[Read more]

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    • Profile picture of LUCIA
      LUCIA replied 2 months, 2 weeks ago

      Hoy tambien me he puesto en contacto con un grupo de wassa españolo de 6 personas que me van a ser de muchísima ayuda y dios quiera, si tengo fuerzas, que yo sea tambien de ellos y nos animemos, todos los dias pasa algo, a veces sospechoso y contar con todos vosotros, créeme, lo mejor que me ha pasado en años. Tengo apoyo de mi familia pero no cre…[Read more]

      • Profile picture of Ashley Gregory
        Ashley Gregory replied 2 months, 2 weeks ago

        Translated:
        Today I have also contacted a group of Spanish wassa of 6 people who will be very helpful and God willing, if I have strength, that I am also theirs and we are encouraged, every day something happens, sometimes suspicious and count on all of you, believe me, the best thing that has happened to me in years. I have support from my family…[Read more]

    • Profile picture of Ashley Gregory
      Ashley Gregory replied 2 months, 2 weeks ago

      Google Translate:
      Thank you very much for your words of encouragement and for accepting my friendship. This forum is the best refuge you can find. We understand everyone because we are on the same path. Today I am a little worried because I have been in pain for months since my last spine operation, sometimes unbearable. I had a CT scan last week…[Read more]

    • Profile picture of Ashley Gregory
      Ashley Gregory replied 2 months, 2 weeks ago

      Translated: It’s great to know that you’ve found a group of 6 people you can count on to receive support and listen to you. In addition to the close family, it is good to have others who understand.

    • Profile picture of Ashley Gregory
      Ashley Gregory replied 2 months, 2 weeks ago

      Translated: We like to think of all of us as family! I’m sorry to hear that your extra back problems cause pain. I hope you can take care of that and feel relief. I have a lot of back problems, some from old age, some from injuries. Physiotherapy has helped me a lot. I hope you get better soon!

  • Profile picture of LUCIA

    LUCIA and Profile picture of Price WooldridgePrice Wooldridge are now friends 2 months, 2 weeks ago

  • Profile picture of Patri

    Patri and Profile picture of LUCIALUCIA are now friends 2 months, 2 weeks ago

  • Profile picture of LUCIA

    LUCIA posted an update 2 months, 4 weeks ago

    A mi lo primero que me recetaron fue el firdase pero en España no había laboratorio y en la Farmacia del Hospital Fundación Jiménez Díaz de Madrid me hicieron la fórmula magistral y este tratamiento en España lo financia el hospital. Si no, no hubiera podido ni pagarlo ni seguir adelante. Todos los sintomas de libro, debilidad muscular, fatiga…[Read more]

    • Profile picture of LUCIA
      LUCIA replied 2 months, 2 weeks ago

      Muchísimas gracias por tus palabras de aliento y por aceptar mi amistad. Este foro es el refugio mejor que se puede encontrar. Entendemos a todos porque estamos en el mismo camino. Hoy estoy un poco preocupada porque llevo meses de dolores desde mi ultima operacion de columna a veces insoportables. Me hicieron un TAC la semana pasada y tengo…[Read more]

      • Profile picture of LUCIA
        LUCIA replied 2 months, 2 weeks ago

        Hoy tambien me he puesto en contacto con un grupo de wassa españolo de 6 personas que me van a ser de muchísima ayuda y dios quiera, si tengo fuerzas, que yo sea tambien de ellos y nos animemos, todos los dias pasa algo, a veces sospechoso y contar con todos vosotros, créeme, lo mejor que me ha pasado en años. Tengo apoyo de mi familia pero no cre…[Read more]

        • Profile picture of Ashley Gregory
          Ashley Gregory replied 2 months, 2 weeks ago

          Translated:
          Today I have also contacted a group of Spanish wassa of 6 people who will be very helpful and God willing, if I have strength, that I am also theirs and we are encouraged, every day something happens, sometimes suspicious and count on all of you, believe me, the best thing that has happened to me in years. I have support from my family…[Read more]

      • Profile picture of Ashley Gregory
        Ashley Gregory replied 2 months, 2 weeks ago

        Google Translate:
        Thank you very much for your words of encouragement and for accepting my friendship. This forum is the best refuge you can find. We understand everyone because we are on the same path. Today I am a little worried because I have been in pain for months since my last spine operation, sometimes unbearable. I had a CT scan last week…[Read more]

    • Profile picture of Ashley Gregory
      Ashley Gregory replied 2 months, 2 weeks ago

      Translated: It’s great to know that you’ve found a group of 6 people you can count on to receive support and listen to you. In addition to the close family, it is good to have others who understand.

    • Profile picture of Ashley Gregory
      Ashley Gregory replied 2 months, 2 weeks ago

      Translated: We like to think of all of us as family! I’m sorry to hear that your extra back problems cause pain. I hope you can take care of that and feel relief. I have a lot of back problems, some from old age, some from injuries. Physiotherapy has helped me a lot. I hope you get better soon!

  • Profile picture of LUCIA

    LUCIA posted an update 2 months, 4 weeks ago

    Buenos días, estoy recien llegada a este foro aunque mi enfermedad me sorprendió hace ya mas de 10 años. Hasta ahora no he encontrado asociacion ni foro del cual guiarme y compartir sobre esta terrible enfermedad, poco difundida y que ni siquiera hasta hace poco aparecía en el listado de enfermedades raras. He tenido que caminar solita en este mun…[Read more]

    • Profile picture of Kevin Schaefer
      Kevin Schaefer replied 2 months, 4 weeks ago

      Translated via Google translate: Good morning, I am a newcomer to this forum although my illness surprised me more than 10 years ago. Until now I have not found an association or a forum to guide me and share about this terrible disease, little spread and that not even until recently appeared in the list of rare diseases. I have had to walk alone…[Read more]

  • Profile picture of LUCIA

    LUCIA became a registered member 2 months, 4 weeks ago

    • Profile picture of Ashley Gregory
      Ashley Gregory replied 2 months, 4 weeks ago

      Hey Lucia!

      Welcome to the Lambert-Eaton News forums @luciag !
      My co-moderator @pricewool and I are so happy you have joined our community!

      We have members from all over the world with LEMS and have a ton of information to offer! I would love to hear more about your experience with LEMS!

      Please take a moment to read the Using our forums post…[Read more]

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