Recent content by John445

My schedule of the 3R's: Radicava 5:00am (empty stomach) Riluzole 5:30am (empty stomach) Relyvrio 6:00am (empty stomach) Relyvrio 5:00pm Riluzole 10:00pm Add a host of other meds I take not ALS related and vitimans - thanksfully, iron stomach John

Hi Kim: Thanks for you reply. My pulmonogist did a test with a device on my finger which measured my oxygyn levels over night. I do not remember the percentages but the number dipped enouugh to cause concern. So I have an oxygen machine for a gentle push through the nose. tried Ambien and felt...

Hello, I was diagnosed in July of 2022 and so far have slow progression. Recently I have had some nights falling asleep is difficult. My doc perscribed Ambian but looking at the side effects leary about using often. What I have discerned is that I wake up often during the night and have dry...

Started my second round of Relyrio, I get a slight feeling of dizziness which goes away in an hour or so. Taste is terrible, but tolerable. Sorry you are having issues. John

I took my first dose of Relyvrio this morning. I was expecting a terrible taste, but surprisingly found it not to bad. I am feeling a bit strange (stranger than usual lol) and a bit shaky. We will see what comes as I continue on the med. John

My Doc approved it and waiting for first shipment, will then be on the 3R's!

I am currently on riluzole, radicava and will soon start on relyvrio. Strangely my appetite has increased since diagnoses last July. Even though my muscle degradation (particularly arms) is plain to see, my weight over the last six months remains steady. It sure highlights how this disease...

Same experience here, private doc diagnosed ALS last July. The VA provided a form for my doctor to complete and has accepted the diagnoses. I am considered 100% disabled, which unlocks a host of benefits. Our visits to Hines VA Hospital have been wonderful. At the last ALS Clinic with the...

Diagnosed last June through private doctor. As a vet, we are seeing a VA doc, first VA ALS Clinic is the end of this month. We visited the VA two months ago and with help of PVA all documents completed. I have been very open that I want my private doctor to be my primary care physician through...

Hi: I was diagnosed several months ago, going to clinics, dealing with the shock, etc., etc. One thing that has changed recently is an overwhelming need to eat. I was a healthy eater before hand and a bit overweight (really just a bit), but now I am eating six times a day, regular meals and...

Thanks!!

Thanks for the clarification.

Thank you all, good information. I have reached out to the PVA. :) John

Maybe I am confused....... My private doctor has diagnosed ALS. As a vet, I would like to avail of VA benefits. To receive benefits, doesn't the VA need a diagnosis? A VA diagnosis would be a second opinion (which some friends and family recommend). After that, is applying for benefits...

At this point we had our first visit with VA last week, just to get into the system. The next appt is the end of November. Now that I am understanding things better, I will have my private doctor fill out VA form stating my diagnosis. We visited Hines VA Hospital outside of Chicago.