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Last fall 2020, I suddenly developed cardiac issues. Wild variations in BP and heart rate. Had an ablation in December 2020 which failed. Have been on high dose (800 mg day) Amiodarone to try to control high heart rate and had a Pacemaker inserted last month. Things haven’t changed, so the...

Hello everyone! My breathing has been declining over the past 9-12 months. FVC is down to 34% from 48%, and the current MIP is -8. My question is how I "feel vs look" in my mid-torso. I'm not overweight (6'2" and 179), but my stomach feels like there's is something pushing outward...

Good morning! In November 2019, I began having severe variations in pulse rate from the 30s to 170s bpm. I wore a Holter monitor for a week and it was determined I have A-fib. I was put on medication (Metoprolol and Eliquis). Last month the a-fib began to get worse and more frequent and lasting...

I was diagnosed with limb onset ALS in Septemer 2017. I have recently been diagnosed with tachycardia by my cardioligist, wherein my resting heart rate suddenly spikes to 140-165 and stays that way for 2-5 minutes and then subsides. Does anyone know if this is a common issue with ALS? Has any...

Hello everyone! I'm now in my second year since diagnosis of limb-onset ALS. As of today, all four limbs are involved, but recently I've been experiencing fasiculations on the top of my head. At first I thought it was an insect and then thought a breeze within the house was causing the...

Has anyone out there been prescribed these? If so, what is or has been your experience with them? Do they help or are they too cumbersome? I currently have AFOs, but the therapist says I should consider the KAFOs due to weakness/instability in my upper legs.

Last Thursday I had a PEG or G-tube inserted. Procedure went well and it looks okay but very painful, especially when I move in certain ways. It was inserted because my breathing has become so compromised; therefore it will be dormant until needed. I underwent a "twilight" anesthesia but I...

Hello all. I'm currently using non-invasive Trilogy and Cough Assist devices, and I'm scheduled for PEG surgery on August 9. At my PEG consult yeterday, the doctor asked me if I had heard of diaphragm pacing system that's sometimes considered as non-invasive devices become less effective. My...

I have now been advised to have a PEG port placed in my stomach since my breathing has taken a turn for the worse. I can still eat and drink, but I was told my FVC was now down to 50% so it's time to do this procedure before my breathing becomes even more compromised. The procedure would be done...

I have begun the SAH application process. One of the processes is to do find an escrow agent who will handle modification and construction reimbursements. Has anyone had success with a particular escrow agent? I understand banks, title companies and attorneys may do this, but I also want to...