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Stephanie replied to the topic I feel my Dr. is hiding the truth in the forum Diagnosis Information and General Questions 1 year, 12 months ago
Lisa – from reading your challenges I realize there may be significant differences between the way we obtain care in the U.S. and Canada. I return to my recommendation that you contact the Mayo Clinic in Rochester, MN or an ALS certified center to obtain a consultation and understand the cost to do so. Advocate for your care and make informed m…[Read more]
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Stephanie replied to the topic I feel my Dr. is hiding the truth in the forum Diagnosis Information and General Questions 1 year, 12 months ago
Lisa. My dad definitely has extensive wasting in his hands and weakness as described with split hand sign. I tracked the hand wasting and weakness as one of the symptoms he was having out of diligence when we were trying to find out what was wrong with him. None of the neuros we saw mentioned split hand sign but they did consider his hand wa…[Read more]
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Stephanie replied to the topic I feel my Dr. is hiding the truth in the forum Diagnosis Information and General Questions 1 year, 12 months ago
Hey Lisa. I know for certain that Mayo is open to people from every country. They have an excellent team who probably can answer insurance questions for you in advance as they regularly care for non-US patients. Another step you might take that I see others recommended is to make an appointment with an ALS Association Certified Treatment Ce…[Read more]
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Stephanie replied to the topic I feel my Dr. is hiding the truth in the forum Diagnosis Information and General Questions 2 years ago
Hi Lisa. I’m sorry to hear about your health and your frustration. I’m not an expert. My 76-yr-old father was diagnosed in June with late-stage ALS. It took us 3 years to get a diagnosis. We spent so much time and have had a significant amount of anxiety about the root problem that resulted in his symptoms and caused us to see neur…[Read more]
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Stephanie replied to the topic Respiratory onset? in the forum Diagnosis Information and General Questions 2 years, 3 months ago
We saw a number of doctors at Mayo Clinic. Dr. Eric Sorenson is the neurologist we saw who diagnosed ALS (https://www.mayoclinic.org/biographies/sorenson-eric-j-m-d/bio-20054094). Applying was much simpler and less intimidating than I expected. I sent in an online request for appointment (https://www.mayoclinic.org/appointments). They fol…[Read more]
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Stephanie replied to the topic Respiratory onset? in the forum Diagnosis Information and General Questions 2 years, 3 months ago
Hi Michael. I’ve been working with my dad to get a diagnosis for what we understand is respiratory onset ALS, which we received at the Mayo Clinic in Rochester MN in July this year. The EMG at Mayo didn’t reveal anything related to ALS but I understand from the neurologist that this isn’t unusual as there are very specific things that have to b…[Read more]
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Danielle Uskovic and
Stephanie are now friends 2 years, 4 months ago -
Stephanie changed their profile picture 2 years, 4 months ago
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Stephanie replied to the topic Respiratory onset? in the forum Diagnosis Information and General Questions 2 years, 4 months ago
My father was diagnosed at the Mayo Clinic with late-stage, respiratory onset ALS three weeks ago (July 2020). We’ve been searching for answers, seeing many doctors, and having numerous diagnostic appointments for 3 years trying to understand the cause of his rapidly declining health (breathing problems, significant weight loss, weakness in his…[Read more]
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Stephanie posted a new activity comment 2 years, 4 months ago
Hi Amanda. Thanks for your message. The ALS community is such a warm and welcoming group of people. I’m reposting what I sent Dagmar as I’m not sure if you’ill see my reply to her. My father was diagnosed with late-stage ALS, respiratory/thoracic onset at the Mayo Clinic in July. It’s been a three-year journey to get a diagnosis that explains his…[Read more]
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Stephanie posted a new activity comment 2 years, 4 months ago
Hi Dagmar. Thanks for your message. The ALS community is such a warm and welcoming group of people. I’m not sure if Amanda will see this so I’ll also post it for her. My father was diagnosed with late-stage ALS, respiratory/thoracic onset at the Mayo Clinic in July. It’s been a three-year journey to get a diagnosis that explains his rapid…[Read more]
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Hi Stephanie, here is the link to the discussion of “Respiratory Onset.”
– (@) August 4, 2020
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Stephanie became a registered member 2 years, 4 months ago
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Hello Stephanie,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or…[Read more]
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Hi Dagmar. Thanks for your message. The ALS community is such a warm and welcoming group of people. I’m not sure if Amanda will see this so I’ll also post it for her. My father was diagnosed with late-stage ALS, respiratory/thoracic onset at the Mayo Clinic in July. It’s been a three-year journey to get a diagnosis that explains his rapid…[Read more]
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Hi Stephanie, here is the link to the discussion of “Respiratory Onset.”
– (@) August 4, 2020
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Hello Stephanie, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]
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Hi Amanda. Thanks for your message. The ALS community is such a warm and welcoming group of people. I’m reposting what I sent Dagmar as I’m not sure if you’ill see my reply to her. My father was diagnosed with late-stage ALS, respiratory/thoracic onset at the Mayo Clinic in July. It’s been a three-year journey to get a diagnosis that explains his…[Read more]
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