PLS - bulbar region only
Hi,
I'm new to this site.
In Feb. of '04, I noticed when I got upset or angry my throat felt like it closed up and I would speak through my nose. This didn't happen all the time, just randomly. It didn't happen at work either. I dismissed it. Thought it would go away. After about 3 weeks it was still happening so I went to the doctor. He thought it was stress related and prescribed Lexipro (anti-depressant). I didn't take it. I thought I could work it out on my own. In October of '04 it started happening at work. When I would speak I'd have to swallow after about every 3 words. It almost resembled panic attacks. I went back to the doctor and started taking the Lexipro. The symptoms gradually got worse. I went to another doctor and she thought it might be allergies or a psych problem. So I jumped through those hoops and it kept getting worse. I had to switch what I was doing at work, because my speech got so bad. I finally retired at the end of '05. In Feb. of '05 I went to another doctor, who right off the bat said he thought it was a neurological problem. So I went to a neurologist who gave me the shock of my life. MND. I had no idea what a MND was. He thought I should have a 2nd opinion. I went to another neurologist at Loma Linda who thought it was progressive bulbar palsy (PBP). The EMG/NCS came out clean. She thought I should have yet another opinion. So I went to UCLA and had a consultation in the morning by one neurologist and another EMG in the afternoon by another neurologist. Their conclusion was PLS, which my neurologist at Loma Linda thinks is a more accurate diagnosis that PBP. My symptoms are only in the bulbar region. I do have trouble chewing and choking (mainly on my own saliva). Only my husband and my sister can understand me some of the time (if they look at my lips). I use a writing board to communicate. My arms, legs, trunk are fine. It's been 3 years since the onset and I seemed to have stabilized. I try not to dwell on it, but hey, it's just always there. I'm a born again Christian and know that God is in control. I trust Him completely to work in my life in what ever manner He desires. He is my strength every minute of the day. It is hard to be social because I feel out-of-the-loop, but I push myself and it usually turns out all right. I am very thankful that it has remained isolated in the bulbar region thus far.