• Anita became a registered member 1 year, 11 months ago

    • Hello Anita,

      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. You can also search for past topics or discussions by typing a keyword in the forum’s search bar. If you have any questions, concerns, or even suggestions, just let me or Amanda (who shares co-moderator duties with 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

      • Thank you Dagmar Munn, for the lovely email. We lost our mum 2mths ago from ALS, she was diagnosed in 2018 she was 69 and passed at 72. It was the saddest thing I have ever had to watch, our mum was just beautiful. I guess the reason I joined is that I’m scared I am showing symptoms. With Mum it was her speech that we noticed first and the rest is history. For me I have a sore shoulder, forearm, elbow, wrist, thumb and pointer finger. they all hurt and feel burning, not sure if there is any weakness and today when using the mouse I have muscle twitching in my thumb and hand, and have become really scared. I had a cramp in the arch of my left foot as well. If I hold onto something with the right arm it feels little tired. Even typing my wrist is hurting I know these are all sensory although I have read this is how it presents in some people. I know I have read way too much information. There wasn’t any family history of any other member ever having the disease. Now with mum not being here with us I can’t ask her questions. Mum didn’t have any tests to see if she was carrying the gen, as her neurologist it wasn’t recommended as there wasn’t any family history. I have been extremely stressed and I’m missing my mum terribly. From your knowledge does any of these symptoms sound like ALS? I’m 49 female with a 9 year old son. Hope you are having a lovely day and look forward to hearing from you.

        • Anita, I am sorry you lost your mom to ALS…especially so recently. My thoughts are with you and your family.
          Regarding giving you advice whether or not you have the symptoms yourself – – I am not a medical professional plus, it is impossible to diagnosis anyone via email 🙂 My best suggestion is to see your neurologist as soon as possible. I know it’s easy to put it off, hoping to avoid the possible answer the doctor may give… but it is better to consult a neurologist rather than spend weeks worrying, reading everything on the Internet, and second-guessing every twitch and cramp.

          The medical community has made great strides in discovering more biomarkers and ways to identify ALS… so even compared to a few years ago, your doctor may now have more available than when he diagnosed your mother.

          Please use us as a resource for you – – I am happy you have joined our forum.

          • Hi Dagmar, yes I did talk to mum’s neurologist and he said that he wasn’t even concerned about me or any of my siblings as the disease hasn’t ever been in our family and out chances of contracting the disease has only increased a little to anyone else with in the community. If it was in our family we would have known. My mums mum was one of 11 all lived to a ripe old age and so to my great nana. My mums dads family all the same and my understanding is that is doesn’t skip a generation. He did mentioned that stress can cause strange things and because we were so close to it all we have become over sensitive towards anything that happens within our bodies. He mentioned that he even has moments of doubt because he works with it all day. I know you said you couldn’t diagnose and you were not a doctor, although from you vast research and knowledge do anything I out line sound familiar? Thank you for your time and look forward to hearing from you. Anita

    • Hello Anita, 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!

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen


We're not around right now. But you can send us an email and we'll get back to you, asap.


Log in with your credentials


Forgot your details?

Create Account