Forum Replies Created

  • sjmarcum4

    Member
    December 9, 2020 at 7:31 pm in 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 medical and financial decisions.  I would hate if you give over your power to take care of yourself because of systems and practices.  If you were my sister I would advise you to find an ALS specialist and come to peace with the cost.  Whether or not you have ALS, getting a diagnosis and obtaining care as early in your medical issue can make a significant difference.  You’ll make the right decision.

  • sjmarcum4

    Member
    December 8, 2020 at 10:16 am in 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 wasting and weakness in the diagnosis at Mayo.  The big lesson I’ve learned is that you’re best served to find an ALS specialist as they see the combinations of symptoms more frequently even than other neurologists.  The specialists at our ALS certified center evaluate my dad’s symptoms and progression at every appointment, including muscle strength on a scale they’re tracking across the visits.  Another thing to consider is that once you’re diagnosed, the doctor may prescribe Riluzole as I understand it’s the most likely approved drug that slows progression.  Even though my father’s in late stage they prescribed it for him.  You may have even more options in Canada!

  • sjmarcum4

    Member
    December 5, 2020 at 3:42 pm in 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 Center (https://www.als.org/local-support/certified-centers-clinics ), although I don’t see they list any in Canada.  You may be able to find something comparable in Canada.  Once we received the Mayo diagnosis we moved my dad’s care to a certified treatment center near us.  They’ve delivered outstanding care and have clearly demonstrated their ALS expertise as they confirmed my father’s diagnosis and deliver us an integrated care plan.

     

    Speaking from our experience and my layperson’s understanding, I understand that early-stage ALS is difficult to diagnose as there’s no definitive blood or other test that can be used.  We were even evaluated for ALS at an outstanding care center in a major metropolitan area only 8 months before our diagnosis at Mayo.  It was just that difficult to diagnose, which is why I recommend you find an ALS expert.

     

    To your question about Mayo’s diagnostic approach, even they didn’t detect ALS from the EMG they performed.  The neurologist diagnosed it based on the symptoms (primarily extensive muscle fasciculations + other observed symptoms) combined with an extensive history I had been keeping over the 3-year period of not just the diagnostic work we had performed but regularly documenting his symptom progression.  I could point to specific abilities, dates, and deterioration.  Therefore, if you aren’t already doing so, I also recommend you maintain a history of your symptoms with dates (e.g., Dec 5, 2020 no longer able to open Ziploc bags, more out of breath after completing my morning 2 mile walk, etc.)

     

    Regarding the EMG, the Mayo neurologist told me that if they had performed it with the intent to diagnose ALS vs. a variety of symptoms that my dad has that are much more complex due to extensive neck and spine surgery and damage that they might have analyzed other specific things in the EMG that would have indicated ALS.  Once we had the diagnosis another EMG wouldn’t provide any benefit.

     

    I recommend you ask to be evaluated for  bulbar onset ALS and potentially even more specifically for respiratory onset (a subcategory of bulbar onset) as this is less common, is the type my dad has, and I’ve been told is especially difficult to diagnose.

     

    And I can second Karl’s recommendation to consult a naturopath or functional medicine doctor as I personally see one and we added one to my dad’s care team this past year, providing a whole different perspective on potential root causes and treatments. Feel free to ask me more questions if you think I can help.  Best!

  • sjmarcum4

    Member
    December 3, 2020 at 8:03 pm in 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 neurologists, cardiologists, pulmonologists, functional medicine doctors, internists, gastroenterologists.  I’m a layperson who wants to help.  I know my advice may not be easy or correct for you but I recommend you apply and go to the Mayo Clinic in Rochester, MN.  This is where we finally received a diagnosis.  We didn’t do this earlier because it seemed insurmountable to apply, travel, spend the money, etc.  However the web-based application process was easier and costs were less than we feared.  Mayo’s integrated care approach is amazing.  We were clear about the symptoms, diagnostic work, and frustrations we faced when we applied.  They matched us with a care team to analyze the problem.  We spent 2 weeks in Rochester but we came away with a diagnosis and plans for next steps for treatment in our local area.   My prayers and best positive energy are with you.

  • sjmarcum4

    Member
    September 2, 2020 at 4:48 pm in 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 followed up with a phone call within a week or so.  We traveled from Washington state and they’re very familiar with hosting patients who travel long distances.  The Mayo Clinic’s amazing in how they manage their schedules and integrate care.  We had to book 6 weeks out to get our appointments all within one two-week long trip.  Our situation was complicated involving internal medicine, neurology, cardiology, pulmonology, sleep study, and gastroenterology diagnostic work and doctor consultations.  In the application, I focused on the diagnoses we’d received and the symptoms he was having that weren’t explained by the diagnoses (e.g., rapid weight loss, muscle weakness and atrophy).  I made specific requests for some consultations (e.g., cardiology) but they assigned others (e.g., neurology).

     

    Regarding the SNIFF test, we had that performed at the University of Washington Medical Center in 2019 so Mayo didn’t repeat it but it was helpful in the diagnosis.  In one of Dagmar’s Sept 2, 2020 posts in this thread (thanks Dagmar!) she points out that EMGs are a good test.  We had our Mayo EMG done before seeing Dr. Sorenson.  He told us if he’d suspected ALS, when they ordered the EMG he could have asked for some type of special testing during the EMG that might have shown results consistent with ALS.

    I’m happy to answer questions you may have.  Peace!

  • sjmarcum4

    Member
    August 31, 2020 at 12:37 pm in 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 be looked at in an EMG for it to reveal information consistent with ALS.   The key symptom that convinced the Mayo neurologist that my dad has ALS is extensive muscle twitching (fasciculations) in his arms and legs.  He also has symptoms like significant weight loss (40 pounds in 8 months); loss of strength in hands, arms, and legs; loss of energy; and loss of vocal strength in addition to both sides of his diaphragm being significantly elevated and weakened.  The diaphragm issues were diagnosed by a combination of pulmonologist and neurologist through a standing and laying SNIFF test and MRI.  My dad has extensive nerve damage in his spine, which made diagnosing the diaphragm issues and ALS more difficult.  We’ve transitioned to an ALS Association Certified Center both for local care and another opinion.  Interestingly, they are evaluating my dad for Kennedy’s disease, also known as Spinal Bulbar Muscular Atrophy (https://www.kennedysdisease.org/), another motor neuron disease which has similar symptoms to respiratory onset ALS but which can be diagnosed via a blood test.  Based on our 3 year journey to a diagnosis, I highly recommend you investigate both Mayo Clinic and an ALS Associated Certified Center near you, if you haven’t already considered these options.  I hope this is helpful.  My best to you.

  • sjmarcum4

    Member
    August 4, 2020 at 7:46 pm in 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 his hands/limbs, headaches, passing out).  I’m sharing this in the event what we’ve experienced or learn can help someone else.  His situation was complicated by extensive nerve damage to C5 in his neck.  He has bilateral elevated and weakened diaphragm which doctors thought was due to phrenic nerve damage.  They were confused because the phrenic nerve comes out of C3/4/5 and if one area is damaged, the others are supposed to pick up the load.  As it turns out the damage to his diaphragm was due to ALS and the other neurological issues made it all the more difficult to diagnose.  For those who are suffering from breathing problems, we had a “standing and lying Sniff test” that was very valuable to know how functional his diaphragm is.  We had multiple EMR nerve conduction tests, including at Mayo, that didn’t spot ALS.  The key symptom that we didn’t know to look for which convinced the neurologist at Mayo that he has ALS is extensive nerve fasciculations (muscle twitching) which others reported.  The Mayo neurologist said that 5% of all ALS cases are respiratory onset and that they’re difficult diagnose.  My dad’s been using a BiPAP machine at night since August 2019.  Over the past few months he’s advanced to needing extensive breathing assistance the during the day, preferably on his BiPAP but we’ve also been fortunate to have a ResMed Astral 150 that’s portable.  We’re lucky that he’s still able to walk within the house but it’s increasingly exhausting for him to do so.

    I look forward to watching this thread for information and contributing if there is something I/we can offer.