My husband just got diagnosed with Bulbar onset ALS May 14,2024. We had been told by the neurologist May 1 that it’s a very big possibility it’s ALS. He got blood work done to rule any other possibility or diseases. His EMG should loss of motor neurons with high level of CK. He was diagnosed and we are going for second opinion because he had started regaining muscle, strength, mobility since he was already wheelchair disabled. His left arm has lost all muscle mass that he couldn’t lift his arm above his shoulder. But now he lifting 2 pounds weight his arms above his head. He regains steps, tiptoe, stand on one leg, jump, and do stretch. I believe the AlS plateau exists but getting strength without being on the drugs. He is doing this without any experimental drugs from the doctor. He had refused them. He is still improving. He can get into this study it will be amazing. He said it felt like something was being recharged in his body. I hope y’all will get with me because ALS will no longer be my faith! I will continue to fight for this disease and make awareness to advocate for those who lost their life!
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