Bill43
Member
- Joined
- Nov 21, 2011
- Messages
- 10
- Reason
- PALS
- Diagnosis
- 04/2011
- Country
- US
- State
- Florida
- City
- A Small Beach Town
Hi Folks,
I guess I'm one of the new PALS on this bus. I can't say I like our destination but I figure with a bus full of other PALS the trip should be easier.
I first got the word that I may have ALS from my neurologist last April after I failed two EMGs and a NCV test. She referred me the Mayo Clinic in Jacksonville where they did several MRIs, a CAT scan, lyme disease blood test, a spinal tap (ugh) and various other test that are just a blur now. On July 29th they positively, absolutely, guaranteed me it wasn't anything else but ALS.
My first symptom was November 2010 when I began noticing a weakness in my right thumb. Now a year later I can't walk without a walker in front of me, I've lost about 30 pounds, have trouble rolling over in bed, have trouble swallowing liquids, losing my voice and have short, shallow breaths. So I suppose this disease is progressing rather rapidly.
My neurologist referred me to a pulmonary specialist for my breathing problems. He had me wear a oxygen sensor on my finger one night and the results were borderline bad. Now he has me scheduled for an overnight sleep study next Tuesday. He says he wants to get me on a BiPap machine as soon as possible. The sooner the better he says and from what I've read here he's right about that. Everything considered I think I have some pretty good doctors working with me.
So anyway, I'll just grab a seat in the back of this bus and try to enjoy the trip.
I guess I'm one of the new PALS on this bus. I can't say I like our destination but I figure with a bus full of other PALS the trip should be easier.
I first got the word that I may have ALS from my neurologist last April after I failed two EMGs and a NCV test. She referred me the Mayo Clinic in Jacksonville where they did several MRIs, a CAT scan, lyme disease blood test, a spinal tap (ugh) and various other test that are just a blur now. On July 29th they positively, absolutely, guaranteed me it wasn't anything else but ALS.
My first symptom was November 2010 when I began noticing a weakness in my right thumb. Now a year later I can't walk without a walker in front of me, I've lost about 30 pounds, have trouble rolling over in bed, have trouble swallowing liquids, losing my voice and have short, shallow breaths. So I suppose this disease is progressing rather rapidly.
My neurologist referred me to a pulmonary specialist for my breathing problems. He had me wear a oxygen sensor on my finger one night and the results were borderline bad. Now he has me scheduled for an overnight sleep study next Tuesday. He says he wants to get me on a BiPap machine as soon as possible. The sooner the better he says and from what I've read here he's right about that. Everything considered I think I have some pretty good doctors working with me.
So anyway, I'll just grab a seat in the back of this bus and try to enjoy the trip.