• Anne became a registered member 2 years, 4 months ago

    • Hello Ann,

      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 – – I look forward to chatting with you! Dagmar

      • Thank you. I’m being referred to neurology and rheumatology at a research hospital in my state to pinpoint my disease. I’ve had numerous rounds of bloodwork and scans and the only thing that can back abnormal was a high ANA so they investigated autoimmune but so far all those antibody specific tests have come back negative. Based on my own research, I’m leaning toward ALS. I’m presenting with left hand and wrist weakness that is also beginning to show in my right. Some heaviness in my legs, some numbness and tingling and cold hands and feet, and muscle spasms all over. Some feel like vibrations and others muscle jerks. I’m definitely terrified as I have five small children and work full time and my husband works a job where he is gone quite often. I know it’s not healthy to think about all the what if’s but I think that’s what moms do. You seem to have a slower progression of the illness if you are going on ten years. Do you take medication or do any therapies or any specific diets to slow the disease?

        • Hello Anne, I feel for you being in that grey area of no-diagnosis-yet and wondering/worrying. I guess, if I had to describe one feeling I have that make ALS unique – – is feeling like there is a constant low-hum in my body or, I’m a piano with the strings all pulled too tight 🙂

          I hope that my slow progression is due in some part to my daily habits: keeping stress low/focusing on the here-and-now, small bouts of gentle exercise, good sleep, healthy meals and feeling I’m supported by family and friends. The only medication I take is Riluzole. Began it within 1 month of diagnosis and 10 years since.

          Perhaps if you have the time, the (free) ebook I wrote about my 1st year with ALS would be helpful… it is a quick read. It’s filled with tips, ideas and humor. It can also be downloaded as a PDF. Use this link: https://alsandwellness.blogspot.com/2015/07/new-book-align-lengthen-strengthen-your.html

          Hope this is of help to you. Dagmar

    • Hello Anne, nd welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let us know. We want to help in anyway we can.
      The ALS forum members are a mixed group of people who are all connected to ALS in some manner. A few like myself, have a hereditary predisposition (genetic mutation) to ALS, some volunteer for clinical trials, some are pALS or caregivers, and still others are involved in medical practice or research. The members are willing to share their experiences and information.
      You are welcomed to provide feedback or suggestions for the forum. We strive to cultivate a supportive environment for our members, and we value providing up to date and relevant information.
      Please let us know if you need any information or assistance.

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