Recent content by Foodie1

  1. Foodie1

    Gene Testing

    Thanks Laurie Nobody has verified my shrinking tongue because nobody knew what it looked like before 😊 I just know that it is plus I am doing other things like biting my tongue and cheeks. Sometimes when I open my mouth salvia sprays out. Also when I swallow I make frog sounds which is probably...
  2. Foodie1

    Gene Testing

    I tested negetive for C9 a while back and today my results from the Envite ALS panel which includes SOD1 came back negative. My most recent EMG a month ago came back negative. Doctor said it it still possible to get ALS Even if gene tests come back negative and is something to keep watching. My...
  3. Foodie1

    Well...I guess its time I asked for help.

    Dr. Robert Brown at UMass in Boston is regarded as one of the best ALS doctors in the country Let alone the best bedside manner. His assistant is named Beth. Call her and tell her what is going on 508-334-5989
  4. Foodie1

    Bulbar ALS with clean EMG?

    That is a good question AMAMP. Let me think .........??? My mom was diagnosed in May of 2017. She started with raspy voice and then slurred speech probably around 2016 or maybe a couple of months before that. She did not experience ALS symptoms in her lower extremities until about a year after...
  5. Foodie1

    Bulbar ALS with clean EMG?

    Your mom sounds like my mom. My was was 70 years old strong as an ox but was slurring her words, facial and tongue twitching,drooling and choking on food. Went to doctor after doctor and nobody knew what was going on. Then she saw two different neurologists in St. Louis and got to clean 2 EMGs...
  6. Foodie1

    Tongue soreness worried

    Thank you 🙏🏻
  7. Foodie1

    Tongue soreness worried

    What causes tongue biting in ALS patients ? I have ulcers and bruises on both sides of my tongue. When I talk and eat I can feel my tongue hit my teeth and hurts. Last night I woke up in the middle of the night because I bit my tongue On both sides. I read where your tongue at rest should not...
  8. Foodie1

    Which COVID 19 Vaccine to Get?

    Hi Kim Not sure what part of Florida you are in but there might be a Covid vaccine info Facebook group in your area. I am from St. Louis and there is a st. Louis Missouri Covid vaccine information group that has been very helpful letting people know where openings are for vaccines. There are...
  9. Foodie1

    Larrys passing

    You are so strong Cindy !!! May his memory be a blessing !! Much love to you ♥️
  10. Foodie1

    Tongue soreness worried

    Hi Nikki I am very impressed that you know Wash U in STL. I actually saw Dr. Miller there a couple of months ago with a negative EMG and with a positive chronic nerve change diagnosis. With everything else being negative in terms of bloodwork and biopsies etc. I’m worried that I have Bulbar...
  11. Foodie1

    Tongue soreness worried

    Just throwing this out there to everybody. I want to go the the Mayo Clinic and was curious to know which location has the best neurology department and possible doctors who have seen a lot of Bulbar onset patients. Thanks
  12. Foodie1

    Throat and oral dryness

    My mom tried Pineapple juice but since it’s acidic caused more acid reflux with her weakened diaphragm. Botox really helped but its always a push pull with my mom or it’s always a balancing act. if she was to dry then we would hydrate but then she would get to wet in the mouth etc.. Mucinex was...
  13. Foodie1

    Tongue soreness worried

    Nikki Can the results between C9orf72 presymptomatic test versus a diagnostic test be different ? Can someone be negative presymptomatic but positive on the diagnostic version of the gene test ?? Thanks
  14. Foodie1

    Questions Regarding New Diagnosis

    Thank you for sharing. I can relate to you because my mom passed away from Bulbar onset at 74. 2 years after her diagnosis at the Mayo Clinic. My mom was mobile up until about 2 months before she passed. Once she was permanently in her wheelchair she really went downhill fast because she wasn’t...
  15. Foodie1

    Tongue soreness worried

    I am a 51 year old Male. My mom passed away from Bulbar onset in August of 2019. My Symptoms of all over muscle twitching started in May if this year. My last nerve conduction/EMG in September was negative. Since then I have had muscle pain in cheeks, jaw and lower neck. On certain days my...
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