My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is...
My PALS has been using a Trilogy for the past year. His latest FVC was 26%, with MIP at 20 and MEP at 32. We can tell his weakening muscles continue to affect his breathing, just since Clinic in February. He had some issues with air hunger at night and increasing EPAP from 6 to 8 took care of...
Hello, my PALS was diagnosed in May and today had his 2nd ALS clinic visit at Texas Neurology. I’m just not understanding the respiratory numbers.
His first visit in July the respiratory therapist said his MIP was -30 and MEP was 93. Today she said he was at -11 for MIP and 48 for MEP. No one...
Well yesterday I went for pulmonary test dr ordered.
Thought it was for a new read on FVC but turns out it was for MIP and MEP basically the input pressure and expatory pressure which read as MIP 45%__47
MEP 22%__ 43. Had blood gas reading pCO2. 41.4 mmHg
To me their just numbers but dr...
I have had MG symptoms for a year, bulbar onset, with much relief from Mestinon. I do not have an MG diagnosis because all the tests, including tensilon, were inconclusive. Tensilon only improved my respiratory VC by 7%. My resp VC is now down to 60% but my MIP and MEP are holding steady, not...
I am hoping someone can help me to understand the breathing test results from yesterday. I know that Steve's numbers have went down but the clinic was careful not to discuss to much in front of Steve.
Steve continues to believe there are not a lot of changes but I have noticed them and I am...
Hello all. My husband has a 4 month, ALS clinic appointment next week. He will have his respiratory function measured then. I am not sure how that will go, but I am assuming his values have decreased (sorry, I don't know his MIP/FVC as I was still too stunned at the first clinic to absorb...
Two weeks ago I emailed and asked my ALS nurse to call me. When she did I told her that my headaches had returned and that doing even the smallest things left me out of breath and exhausted. I had been to the clinic two weeks prior to our phone call.
She recommended that we once again have my...
I went to the hospital for a visit today, because as my breathing gets worse, we've had to seriously consider adding a BiPAP to my conglomeration of various medical gear.
I was so nervous, but it turns out I didn't really have any reason to be. I've had some bad experiences with doctors in the...