Husband being diagnosed with ALS
Hello,
My husband is in the process of being diagnosed with ALS. In December 2007 he began noticing his voice sounded different although I didn't notice anything unusual. Then by January his voice had a distinct nasal quality. He went to our PCP who first started him on Clarinex in case his symptoms were allergy related. Then he tried Nasacort and finally the antibiotic Cefdinir thinking that it might be a sinus infection. Nothing helped and a CT of the sinuses was negative. The PCP was convinced that we must be dealing with allergies. We requested a second opinion with an ENT doctor.
My husband also began noticing that he was drooling at night onto his pillow.
His liver enzymes, AST and ALT, have been elevated for a year and so, in addition to referring him to an ENT, our PCP sent him to a gastroenterologist who noticed fasciculations of his tongue. A couple of days later at the ENT appointment an examination with a laryngoscope revealed rhythmic fasciculations of the larynx on the left side. That's when ALS was first mentioned. The ENT referred us to a neurologist who also did a thorough exam and mentioned possible ALS.
In addition to bulbar symptoms of difficult speech and drooling, my husband exhibits hyperreflexivity in his limbs, right side weaker than left, ripples in his back and upper arms, but a negative Babinski. He gets cramps in his legs and feels stiff if he sits too long.
He had an MRI of the brain and cervical spine yesterday morning, and Friday he goes for EMG and NCV studies. If the neurologist concludes after the tests that it's ALS, he insists on our getting a second opinion. We're fortunate that there's an ALS center 55 miles from us in Charlottesville VA.
This evening while eating supper, he choked badly. He's choked a couple of times prior to this, but this was the worst episode yet.
We also found out today that an ultrasound done on his liver last Friday shows pancreatic cysts. He is therefore scheduled for a CT of the abdomen next Wednesday.
This is all so frightening and sudden. He is 65 and has been so apparently healthy until December.
Luckily, I'm an RN and worked for 14 years as a staff nurse at our local hospital. I've had patients with MS, but never with ALS.
Thank you all for being open about your symptoms, problems, etc. I'm sorry for what everyone is going through. Living one day at a time is certainly key to surviving.
All the best.
Jane
P.S. I also posted this in the "Welcome New Members - Say Hello" Forum
