Recent content by LynnC

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    What to say when diagnosis is confirmed?

    Yes, you definitely are an inspiration, Carlos/Nighthawk. Have you ever considered writing a book about your journey? I keep thinking how your insights and lived experience would provide much strength (and a healthy perspective) for many to benefit from. I really admire your strength and...
  2. L

    What to say when diagnosis is confirmed?

    You all are absolutely amazing with your insight and strength! Thank you so much for this guidance. I will follow all of it and, Carlos, share your words of wisdom with my sister-in-law and brother, as I know they will be very inspired by them. Thank you again for your kindness in helping me...
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    What to say when diagnosis is confirmed?

    My sister-in-law just received confirmation (second opinion) from Johns Hopkins that she has ALS. She was told that it is a more slow progressing kind, however she and our family are, nevertheless, devastated, especially since her upper nerve conduction study came back "normal," and we were...
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    Any experience with Johns Hopkins?

    Thanks so much for telling me this. I will relay it to my family. Sounds like JH is a great choice for ruling ALS in or out, but not so great on the treatment side. Fortunately, there are other clinics out there. Thanks again. My sister-in-law and her family have been through so much...
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    Thanks so much, Nikki. Yes, I certainly understand about the private message. My email address...

    Thanks so much, Nikki. Yes, I certainly understand about the private message. My email address is: [email protected] I see that Dr. Jeffrey Rothstein is the top guy there. I think they're going to request him, since he's doing so much research. Some of the posts here say he doesn't...
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    Hi Patricia, I saw on the message boards that you've had experience with Dr. Rothstein. My...

    Hi Patricia, I saw on the message boards that you've had experience with Dr. Rothstein. My sister-in-law is considering getting a 2nd opinion from him, as she was recently diagnosed with ALS. During your appointment, did they discuss treatment options and the research they're doing? I know...
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    Any experience with Johns Hopkins?

    They live in Western PA. Looks like the University of Pittsburgh and Allegheny General Hospital both have ALS Clinics? If anyone has gone there for treatment, I'd be very interested to hear about your experience. Thanks so much!
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    Thanks so much, Nikki. Would you mind telling me more about your sister's experience at JH...

    Thanks so much, Nikki. Would you mind telling me more about your sister's experience at JH, e.g. if the neurologist (or an intern) did the exam, how long the neurologist spent with her, if he mentioned the research they're doing, how long ago she was seen there,etc.? My brother/sister-in-law...
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    Any experience with Johns Hopkins?

    Thank you for sharing that. I will tell my family about the University of Maryland also. I'm here in MD, but they live out of state. If the ALS is confirmed, they may go to a clinic closer to them for treatment. Always wise to explore options! Great idea to check in with the ALS...
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    Any experience with Johns Hopkins?

    Thank you both so much. That's surprising (and disappointing) to hear about Hopkins. They definitely sound like they're on the forefront of ALS research, so I was anticipating to hear that they were more proactive (than most places). Guess we just have to take this one step at a time, and...
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    Any experience with Johns Hopkins?

    Hello, My sister-in-law was recently diagnosed with ALS and is seeking a second opinion. The neurologist had an intern do the exam, was brutal in delivering the diagnosis, and gave no treatment plan whatsoever, not even mentioning research. Wondering if this is "typical" in the industry...
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