als clinics

  1. KimT

    Another RT and more issues

    After a lengthy trial with the first medical supply company for my BiPAP, I ended up sending it back. The RT was so annoyed at the "machine" and "ALS" that she just couldn't work with me. Laurie ended up helping me with the proper settings but either my doctor or the medical company didn't...
  2. A

    About Multidisciplinary ALS Clinics

    I have been attending every 3 months an ALS clinic. I can see some advantages but also some problems. I understand that this is the modality of attention most recommended, but I wonder if it is the most beneficial for all or just some of the patients. While it is convenient seeing several...
  3. twitchykitty

    Update re: overnight breathing

    My last thread closed so just a quick recap ( from 6 weeks ago) I added daytime issues I don't breathe well enough on my back when I wake up so I have to roll on my side where it's much easier (but uncomfortable) My last FVC was 33% August 2015 (local dr is chasing the new test up this week...
  4. karla r

    Still working on ALS Clinic

    I am really now unsure where to go from here. Have been trying to keep posts at a minimum, and here is why. Had appointment with my primary doc. He said to keep my follow up with #2 neurologist. If he didn't send me on to the ALS clinic for eval, then go back to the 1st, and see if she can make...
  5. lgelb

    Resource Second opinions and first clinic visits

    Do you really have ALS? A diagnosis of ALS or any other motor neuron disease (PLS, PMA, PBP, MMN) is made “by exclusion” (no higher probability presents itself) and by published criteria, most critically symptoms and muscle/nerve tests. Doctors may legitimately differ on whether you have...
  6. karla r

    Hate my neuros office

    I am upset, frustrated, and kinda angry. I was worried because none of the ALS clinics have contacted me about an appointment even though the referrala were supposed to be sent June 11. I checked 3 times with my doctors office, and was told they would send the next day. I actually went there 2...
  7. C

    Starting the journey...

    Hi, I was diagnosed by my Neurologist at the end of October and since have been to two ALS clinics that have confirmed the diagnosis. I am 48, divorced and share custody of my two children. Things are a little overwhelming but I have told all of my family but the kids. I am waiting until the...
  8. starente15

    ALS Clinics

    Could anyone tell me what happens when you visit an ALS clinic/if they've ever been to the one in Chapel Hill, NC.? Thanks!
  9. B

    Frustrated!

    I want to get some feedback on a problem I have. Was diagnosed June 17, 2014. At that time I was scheduled for an appointment for follow up visit on July 17th. I was then scheduled for a follow up appointment October 7th. I believe my disease is progressing rather fast. I have a concerns...
  10. B

    Troubling EMG results - need help...

    I posted a while back about my mother who had trouble swallowing and partial loss of speech / dysphagia back in december 2013 and we have now been through two EMGs, as her symptoms are more or less the same (although worsening a little bit). The results look really bad yet the doctors do not...
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