slow progression

  1. KarenNWendyn

    Beethoven Symphony #9

    I’m sure many of you are familiar with the “Ode to Joy” from Beethoven’s Ninth Symphony. The full symphony is nearly an hour long and is arguably the greatest symphonic work ever written. I have been playing principal bassoon in a semi-professional orchestra for a number of years. Our...
  2. G

    Just diagnosed with ALS

    Want to know what things I can do to slow progression. I play drums and guitar, the ALS so far hasn't affected that. But I noticed slurred speech around Christmas 2017. Thought that it might of been a stroke, went to the doctor all they found Prolactenoma Tumor on my pituitary.
  3. J

    SMA or ALS

    Hi everyone, first of all, english is not my native language so sorry if my words confuse you. So I have been diagnosed with a mild type of SMA for 7 years, since I was 16-17 year old. I do a check up once every 2 years, and the result is still SMA everytime. The disease first starts with my...
  4. A

    Trial of IVIG

    My mom is 71. She has had one emg that said cipd but no other results showing inflammation. Two more emgs suggesting als. We finally met with a dr that felt ivig is worth a shot since some of her symptoms are atypical for als (burning and tingling in her legs past three years, hand symptoms...
  5. S

    Lunasin again

    Can anyone point me to a report, formal or informal, on the outcome of Bedlack's Lunasin study? I see nothing new in ALS Untangled or via Google search or search here. I'm using up the supply I have on hand, and while my progression is fairly slow, it is happening and the only benefit I've...
  6. worrieddaughter77

    Vitamins/supplements to slow progression?)

    Hi, in various threads i noticed that some of you swear by vitamin D, or other supplements. Could you please share some that you are taking? Are you taking it per dr prescription, or after doing your own research? Thank you very much! Anna
  7. J

    Asking for Help / Back after 1 Year

    One Year passed since my last Post here, i tried to ignore my Sypthoms but i can`t. In September last Year i told you about my left Leg, which i have to concentrate more on when i walk, because sometimes it feels like i am going to grind on the floor if i would not. In addition i have...
  8. A

    Finally have an answer

    Hello all, I received my second opinion at the Mayo Clinic this week and it is technically ALS. My neurologist was sure it was PLS due to the slow progress but my EMG showed a very small amount of lower motor damage. It is confusing but here is my diagnosis: "Diagnosis: Given and that she has...
  9. C


    Hi to all, after 5 days stay in ALS clinik in Germany, I was finally diagnosed with bulbar onsen ALS with sensory involment... The professor told me that when the people are young there was more evidence of widespread muscle wasting in onset with sensory stuff.... I also have tongue wasting...
  10. S

    Phlegm issues

    Hi friends! My mom was diagnosed in Feb/17 and seems to have bulbar onset although the doctors haven't said. Her first symptom was hand weakness and now she has slurred speech, decreased FVC and just recently issues with swallowing. We live in Canada and are getting the generic version of...