fvc

This is my first post in the forum. Although my husband was diagnosed at 38 years old, and 6 years ago already. I never posted before because I just couldn't bare to read what was coming. However, it is now a point in our lives when I think that important decisions will need to be made, and I...

Hello all, I have never posted here, but certainly have used the forums for getting advice for everything! I appreciate everyone here who takes the time to help those with ALS and us CALS. My husband was diagnosed in Nov. 2013. Limb onset at 48 years old. He's done pretty well for someone...

In about 6 hours, my wife will have a RIG placed at UCI's radiology suite. What a crazy two months. It all started on August 1st. Here's a brief run down: FVC down to 44% from 87% four months earlier. Doctor prescribes Trilogy. (Thank you Laurie for the settings!) Wife takes vacation with her...

I am still upright and survived six weeks of travel with family, and three weeks to get the kids back at school and the check ups at the ALS Clinic. My end of the VitalityALS double blind trial thread was closed, so this will be a new update thread. The last posts were to follow up on the Trial...

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...

My wife recently got a Trilogy. I've attached pictures of her prescription. The DME set it up and my wife tried the settings briefly when we picked it up. On further inspection, the setting were not good. (The night time setting might be good if you wanted to run a marathon while sleeping...

Last two weeks I have been sleepy or sleeping all the time. I nap twice a day for 90 minutes. 8 hours at night. I use the ventilator 20 hours daily on Passive AVAPS. Spirometer testing last week was at 19% FVC. Fluid and food intake is good through the MIC-KEY button. No pain, just stiffness...

Hi! I was newly diagnosed in March 2017, but problems started around Aug or Sept 2016. So I'm less than 1 year in and doing ok for now, but yes, I'm declining. Anyway, I was hopeful to go to my 2nd ALS clinic visit because I thought I could get Radicava. My clinic date was 8/4. My doctor said...

Hi I have been a regular poster on here and am still in limbo after 18 months. Yesterday after seeing my pulmonolgist my fvc was lower than ever 3.9. My sniff test was very good though 138. The sniff relates to the diaphragm so again this has confused everyone. I remember though violent...

My wife’s doctor doesn’t want to place a PEG tube. Today the doctor told me I might want to get hospice involved. I’m fully wrecked crying my heart out. Here’s how things happened… My wife started showing symptoms 1/16 and was diagnosed 11/16. She lost both her legs 3/17. Things seemed to slow...