• Mandy became a registered member 1 year, 3 months ago

    • Hello Mandy,

      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

      • Hello! Thank you for the warm welcome. I’ve been tentatively diagnosed with Primary Lateral Sclerosis (PLS), so I’m hoping this could be a place for me since it’s so rare, there aren’t a lot of forums for PLS. I’m a married, mother of 4, in my mid-40’s. I really noticed something was wrong back in about March when my left foot wasn’t cooperating. Now the weakness has also affected my left arm, dexterity in my hands and also now feeling a bit weaker on my right side, but still not as bad as the left. I’m very spastic and tight. I get tremors sometimes and a little twitching. I’ve lost a lot of weight. I’m normally 130 lbs and I’m down to 96 lbs. After months of tests and imaging, my local neurologist said he believes I have PLS. I have an appointment with an academic hospital in a couple of weeks for a final diagnosis and to hopefully start some sort of treatment. I’m currently taking Baclofen and supplements, which help a little. Pretty much everything has been ruled out except for PLS and ALS, which I do hope for PLS, for obvious reasons. And I guess there’s always a chance they find something else, but as the days go on, it’s not looking like anything else. I’m still walking and have tried a cane on bad days or when I go far, but I’m not very coordinated with it, so I just ordered a rollator that should show up tomorrow. So for the long story! But it’s nice to have someone to talk to LOL!

    • Hello Mandy, 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

      • Thank you so much! I’m so sorry about all your loss. Although I haven’t lost anyone to ALS, I lost my mom to Alzheimer’s/dementia, my brother to cancer, a sister to murder, and another brother to COVID. And now I’m sick! Life can be a doozy sometimes, but despite it all, I’m a pretty positive person. I wish I felt better, but people have it way worse than me, so I just roll with the punches. 🙂

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