• Gail Garfield became a registered member 2 years, 2 months ago

    • Hello Gail,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns or even suggestions, just let Amanda (my co-moderator) or me know, and we will do our best to help you.

      Again, thank you for joining our forum – – We look forward to your comments and I look forward to chatting with you! Dagmar

      • Hello Dagmar🙋🏻‍♀️. I am so pleased, and even hopeful, since discovering this forum (and your blog) just yesterday!
        Was diagnosed end of Jan 2020 but have had symptoms since Jan 2019. Went to a dozen doctors since Jan 2019 and had about 15 MRIs and other tests Including an EMG BUT no one connected the dots. Meanwhile my symptoms became obvious to “me” and I feared I had ALS. At end of October my core became very weak and I experienced twitches. I started to google my symptoms and realized the twitches were “fasciculations.” My weak core, weak left leg, voice becoming hoarse at end of day and now these twitches all pointed to a neurological problem.
        After sobbing I began to search for a “knowledgeable” neurologist. You would think that in NYC that wouldn’t be a problem and yet it was. Finally snagged an appointment day before Christmas with a neurologist who had a cancellation-otherwise the wait time was three months! This neurologist ordered another EMG and blood tests saying “I can’t tell you NOT to worry.” Then there was another “wait” for the EMG. Maddening. Had this EMG in mid-January which showed I had a Motor Neuron Disease. The neurologist told me this over the phone. I asked which disease I had, his response “Do you know of Stephen Hawkins?” Wow, what a way to tell me!! Have been a fan of Hawkins and saw the movie “The Theory of Everything” a few years ago.
        —Dagmar and anyone else reading this, the reason I am sharing this background information is to show how difficulty it has been, even living right in the heart of Manhattan, to get a diagnosis. It has affected my course of action. I wonder if others had this experience? —
        This neurologist referred me to an ALS specialist who is director of an ALS center. Another long wait but I called the office of the specialist every other day and got an earlier appointment. This neurologist had me take another EMG that very day and confirmed I had ALS in lower extremities. This doctor however, was kinder and shared information with me. He said the team at the clinic would help me. My first appointment at the ALS clinic is this coming Monday. I am also about to begin Radicava treatments.
        So this brings me and my journey up to date. I’ve been proactive but feel I lost precious time. I don’t know if I can strengthen my “core” at this point??
        I appreciated reading the comments about Radicava on this forum. Once I begin treatment I will definitely share my experience.
        Last night I read the thread on “exercise.” What an eye opener! I had stopped exercising when the “3rd neurologist” told me to. 🤦🏻‍♀️ The PT told me it only takes 3 days for muscles to weaken. I have a lot of work to do but energy is becoming low. Can I still build up muscles and stamina?
        Sorry for thus lengthy comment but I’ve been starved for a connection such as this forum!! Have felt isolated and very anxious and extremely stressed which I’ve been told exacerbates the symptoms. Yes?
        A sweet note: My birthday was February 19th. two weeks ago AND I danced!
        Friends were here and we played 60s music. It was only less then ten minutes but I felt like “Rocky.”

    • Hello Gail, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost my father, grandfather, both aunts, and a several cousins to ALS. My family has been volunteering for medical research for over a decade, and I believe we are getting closer to finding away to stop the progression of ALS.
      Other members are pALS, caregivers and medical professionals. Please review the ongoing discussions and join in at anytime. You are also welcomed to post discussion topics, ask questions and respond to other members. The more we share, the better we all are in this community.
      Please feel free to contact myself or Dagmar if you need any kind of assistance. Again, welcome to the forum!
      Amanda

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