ALS just shows up on list of diagnoses?

[Edward E]

My wife, 47, has had a diagnosis of Upper Motor Neuron Disease, along with dementia, and parkinsonism. As her caregiver for the last 18 months, I was stretched to the max. I had a heart attack 2weeks ago, and had to put my wife in a nursing home.
During a family mtg. (at the nursing home) to discuss care options, we discovered an ALS diagnosis. We have no idea how that got there. She still has not had a nerve conduction, or emg, as yet. We did get in a genetic study, but I would be surprised if it had been completed in 6 weeks. I would also be surprised if her neuro had put the diagnosis in without bringing us in to tell us. Has anyone heard of or experienced anything like this?

Thanks

Ed

 

[gooseberry]

No I haven't. There is some discussion of a Connection between parkinsons and als. It is possible she was tested and you didn't know it. It could be done from blood. Most people go thru a long workup and a process of elimination to reach the diagnosis. However, perhaps she is showing signs on clinical exam and they did an emg or other tests you don't know about. They may have also consulted with neuros that specialize in als. I would have a talk with the doctor if your wife can't explain it.

You say she was showing only umn signs. Any muscle atrophy, weakness, failure or loss of use of a muscle?

 

[Nikki J]

When you say we don't know who does that include? Diagnosis lists are generally put together by the nurse working from the records that came with the patient, the admission note by the attending physician and history given to them by patient and family. The nurse who entered / wrote the list may remember how it came to be added. It is also faintly possible if she takes riluzole that it was added as they need a diagnosis to justify every medication they give.
If she does not have that diagnosis from her neurologist I would take it with a large grain of salt. It could even be that was the closest ICD code ( diagnostic code) to UmN they could find

 

[Edward E]

That may be how it got on there, with the intake. I did not think of that. A lot of people do not get how difficult it is to tell what exactly it is. They hear motor neuron and jump to ALS. Thanks for the help.

Ed

 

[Green Queen]

Ed what a terrible time for you and your beloved wife.
I hope you get to the bottom of this added diagnosis.
Take care of you.
God bless, Janelle x