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    • #20214
      Lisa Ryan
      Participant

      Hi all, I finally got a very short report of my Pulmonary Function Test back after being tested June 5.  It reads :   Baseline Spirometry is within normal limits. There is a significant decrease in flow rates in the supine position suggesting decreased muscle strength.

      The Maximal Inspiratory pressure is within normal limits, but the maximal expiratory pressure is markedly decreased.  This again, suggests significant musculoskeletal difficulty with decreased recoil strength of the ribcage or abnormal movement of the diaphragm.  Further assessment would be of benefit…

      Thoughts on this?

       

      Thanks

       

       

       

    • #20217
      Amanda
      Keymaster

      Good morning Lisa,

      Definitely talk to your doctor about these results. That would be the best way to understand the testing and the implications it may have on you.
      Amanda

    • #20218
      Kathy stitz
      Participant

      I agree with Amanda but actually getting to talk to the doctor can be pretty difficult sometimes.

    • #20223
      Bill
      Participant

      That test is certainly more in depth than the many FVC nd SVC both standing and supine that I’ve had. I’ve had the more comprehensive in a drug trial but the trial techs didn’t understand any results in depth. Doctor would have to explain. We can be very different as pALS.

    • #20229
      Mark S
      Participant

      Lisa,

      June 5th was too long to wait. Talk to the doctor who ordered it, but I would ask to get a referral to a Pulmonologist (assuming that it was ordered by someone else)

       

       

    • #20232
      Kathy stitz
      Participant

      Why did it take over 2 months to get the results?

    • #20592
      Lisa Ryan
      Participant

      Hi Kathy,  that just a mix up in the reports, the doctors said that they did not get an actual report just a note with numbers so by the time they’ve requested it and it comes back, it’s very long.. I saw my family physician 2 weeks ago and he said it shows weak diaphragm And then he said he doesn’t know what to do with this because it was ordered by another doctor and I said they were trying to send me to a lung specialist but then that specialist said my test results were normal so I called the doctor back that ordered the test and her administrative staff said that there is no follow up and that I don’t need to talk to her again so I’ve done nothing about this but I am having pressure in my upper chest and I would almost say throat when I lay down and I’m flat so I have to raise my bed so frustrated

      • #20594
        Mark S
        Participant

        This is infuriating. My chest tightens reading and thinking about your problems and lack of care.

        I keep telling myself (and others) that I have real weakness and have to adjust my life around those limitations.

        I also have anxiety because my care has been blatant malpractice. I finally am developing team that I trust and can communicate with so there is less anxiety and less sporadic problems.

        I spend a lot of time trying to develop clear awareness of what is baseline sensations and function.  If I am worse, first rest, distract my mind. Worse is caused by over exertion or stress. My progression is too slow to be sudden worsening.

        By definition, baseline is better than stressed and fatigued state.

        I don’t know if this helps but don’t give up looking for help.  When stressor hits, try to get back as soon as possible.

        I finally found a psychologist that understands healthcare stress and that alone helped.

        I used to be able to handle stress. I lived in extreme healthcare environments.  Now a txt I have message makes me want to flush my phone. It took me two hours to open an email yesterday.

        You are not alone.

         

         

    • #20595
      Amanda
      Keymaster

      Lisa,

      That sounds so frustrating, beyond frustrating!!! Are any of these medical professionals specialist in the are of ALS? Have you inquired at any of the ALS clinics?

      I sure hope you get some information and support soon.

      Amanda

    • #20597
      Ilana Schatz
      Participant

      Hi –
      Are you working with an ALS clInic? tHE RESPIRATORY THERAPISTS ARE THE MOST KNOWLEDGABLE. WHEN MY PULMONOLOGIST SAW MY FVC SCORE, HE TOLD ME TO GET A TRACH IMMEDIATELY; i HAD THE RESPIRATORY THERAPIST EDUCATE HIM ABOUT ALS AND RESPIRATORY FUNCTION

    • #20627
      Lisa Ryan
      Participant

      Hi Amanda, no it isn’t an als clinic specialist. The last appointment I had was in early April and he basically just wrote me off I just reiterated what the previous doctor said the previous September was in and out in about 30 minutes start to finish he didn’t take anything seriously and I lost respect for him very early in the appointment he said he has 100 ALS patients so he just made it sound like I’m nowhere near the ones he deals with.

      ilana, thank you for asking, the last time I was at an als specialist was in 2019. He did find some abnormal readings that said that there’s no evidence of widespread denervation so that was the end of that and again, not very good clinical exam at all

    • #20626
      Lisa Ryan
      Participant

      Hi Mark, terrible time you have had, makes me frustrated for you.   It’s awful when u fee like you’re alone and not getting anywhere.  I’ll try and reach out to my Neuro muscular dr next week but with this Covid stuff, I don’t even know if I can get in to get another Emg done.. it’s the only method he uses for a diagnosis.  Shame they can’t do a good clinical.  Thanks for the support!

    • #20643
      Mike
      Participant

      Hi Lisa,  I can understand your frustration dealing with doctors who are not be part of an ALS Clinic.  My ALS started as a pulmonary problem as a result of an out of order diaphragm. I currently use a non invasive portable ventilator 24/7.  I’m blessed to be part of a clinic setting which I visit in person or by telehealth every three months.  I have a Neurologist and Pulmonolgist  as well as other specialists to call upon as necessary.  The ability to have someone to email or visit has allowed me to be more relaxed about living with ALS.  Perhaps someone at a state or regional  MS/ ALS  level could help guide you on bringing your health needs under one roof.  Blessings, Mike

    • #20648
      Joan
      Participant

      You need to see a pulmonologist ( lung doctor) specializing in ALS

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