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  1. Blondrea

    Third EMG, It's Official

    I am so sad. I was praying for MMN, but EMG yesterday indicated "no way." I knew it was a remote possibility, but having even a flicker of hope was so important. So I am wondering, what do we do now? I am so unsure. Do we travel the world? (Though I have to keep my job to support us.) Install...
  2. Blondrea

    Copper Deficiency Test is Our Last Hope

    Hello. As some of you know, we got our second opinion, and it's not good. Our doctor is willing to do one more EMG/NCS to see if there is any conduction block (which didn't show up on the previous two tests) because we still hoping (against all odds) for MMN. He is also doing one final blood...
  3. Blondrea

    Second Opinion Soon, Any Advice?

    Hello. My partner of ten years was diagnosed with ALS a few months ago. This was at UCLA. We were finally able to schedule a second opinion at Cedars Sinai. It is happening next Wednesday. I am terrified. Though I realize the chances of its being something else are remote, it is the only hope I...
  4. Blondrea

    Is it Ever a Misdiagnosis?

    Hello. My partner was diagnosed about three weeks ago. He went to Social Security to inquire about disability (for the future, not yet). They told him that benefits will cease if it turns out to be a misdiagnosis, which is sometimes the case. I doubt they see many people diagnosed with ALS. Yet...
  5. Blondrea

    Just Diagnosed - Is Cold Weakness Common?

    Hello. My partner of ten years was just diagnosed. When his hands get cold, they stop working. When they warm up, they start working again. I've never read of this in the forums. Have any of you ever heard of or experienced this? Thank you for sharing your wisdom.
  6. Blondrea

    Help! Is cold-induced weakness a symptom?

    Hello. My boyfriend has "probable ALS." (Per an ALS specialist.) He has both UMN and LMN signs, bad EMG, etc. He also has cold-induced hand weakness. I believe this is called "cold paresis." His hands weaken to the point that he can't turn a key when they are cold. Then, he regains strength when...
  7. Blondrea

    HELP! Dr. says ALS “Highly likely”

    I am terrified. My boyfriend has had fasciculations all over his body for two years. He went to a neurologist recently, who said he tested weak in his hand. He went back for EMG and NCS. At that point, the neurologist said that fibrillations were detected, and Motor Neuron Disease was “highly...