ALS News Today Forums | Stephanie | Activity https://alsnewstoday.com/forums/members/sjmarcum4/activity/ Activity feed for Stephanie. Wed, 08 Apr 2026 17:12:56 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 7f89e802771fcc99f18cd3500466ad04 Stephanie replied to the discussion I feel my Dr. is hiding the truth in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/i-feel-my-dr-is-hiding-the-truth/#post-17099 Thu, 10 Dec 2020 01:31:00 -0600 Reply to I feel my Dr. is hiding the truth

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… Read more

]]> c925eebdb475ab5ed0fc94d1daca2d70 Stephanie replied to the discussion I feel my Dr. is hiding the truth in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/i-feel-my-dr-is-hiding-the-truth/#post-17054 Tue, 08 Dec 2020 16:16:09 -0600 Reply to I feel my Dr. is hiding the truth

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… Read more

]]> 9b373782432430e4afd2ad0c347ef6cd Stephanie replied to the discussion I feel my Dr. is hiding the truth in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/i-feel-my-dr-is-hiding-the-truth/#post-17019 Sat, 05 Dec 2020 21:42:58 -0600 Reply to I feel my Dr. is hiding the truth

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… Read more

]]> 89af1bb6cda64169ce11355ba78c4b53 Stephanie replied to the discussion I feel my Dr. is hiding the truth in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/i-feel-my-dr-is-hiding-the-truth/#post-16990 Fri, 04 Dec 2020 02:03:42 -0600 Reply to I feel my Dr. is hiding the truth

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… Read more

]]> b374483f55f448aaab831b0b931b64b9 Stephanie replied to the discussion Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/respiratory-onset/#post-16246 Wed, 02 Sep 2020 21:48:25 -0500 Reply to Respiratory onset?

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… Read more

]]> f373dc0b2e054eb19f93ca0235f69c9d Stephanie replied to the discussion Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/respiratory-onset/#post-16209 Mon, 31 Aug 2020 17:37:45 -0500 Reply to Respiratory onset?

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… Read more

]]> 49aa1242ae4569adda226cefa1b909f1 Stephanie changed their profile picture https://alsnewstoday.com/forums/activity/p/7138/ Wed, 05 Aug 2020 00:48:37 -0500 0 1f8d33807659db89fabee8022020753a Stephanie replied to the discussion Respiratory onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/respiratory-onset/#post-16040 Wed, 05 Aug 2020 00:46:37 -0500 Reply to Respiratory onset?

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… Read more

]]> 9f60f414bc9ccb10d31d054dfcc531cd Stephanie posted a new activity comment https://alsnewstoday.com/forums/activity/p/7082/#acomment-7136 Wed, 05 Aug 2020 00:22:31 -0500 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… Read more

In reply to - Stephanie became a registered member ]]> a6020baa6289b4b5bd09e2112d2320fe Stephanie posted a new activity comment https://alsnewstoday.com/forums/activity/p/7082/#acomment-7135 Wed, 05 Aug 2020 00:21:34 -0500 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… Read more

In reply to - Stephanie became a registered member ]]> 80fcf1d56a537b796a16b67075d92265 Stephanie became a registered member https://alsnewstoday.com/forums/activity/p/7082/ Sat, 01 Aug 2020 16:45:24 -0500 5