Just a suggestion

[Clearwater AL]

To those who fret they may have ALS. I do not recommend (my opinion) that you request your medical records. Your Neuro Doc went to college for as much as 8 years. Terminology alone may be well over your head unless you attended college 8 years for the same subject. Example; “Demyelinating Syndrome”… that’s an umbrella big enough to cover your neighborhood. And… I (assume) most Neuro Docs have their own personal notes which will not be in your medical records. It takes a lot of research to find what the normal parameters of a certain indication on an EMG is. The same for Nerve Conduction Tests. Blood test terminology is equally overwhelming. There’s other determining factors… age, weight, medications and other conditions only your neurologist can give proper analysis to. In many of my posts I urge patience during the diagnostic process. I also urge to temper your curiosity as hard as it may be to do.

Finally, I also believe (my opinion) medical records during a the diagnostic process are written in caution (fear) of possible future malpractice litigation, insurance company challenges and etc. So maybe “vague” is the key word. (Again, my opinion.) I have found peace in “Whatever it is… it is. I’ll get an update from my neurologist every two months.”

 

[dalvin]

Al, i agree with your statement. even having a diagnosis doesn't help me to understand what all those numbers and other results mean. unless they show you a normal rangr to go with those numbers it might as well be greek.

 

[Mediasmart]

On the other hand, it doesn't hurt a bit to be an arm-chair expert to the extent that one can ask better questions and be perhaps more aware of things that might help speed the diagnosis (i.e. the infamous "it may not be important, but...." sentence).

I also don't want my docs to talk down to me or give me vague sentences. I'd rather know enough that I can understand at a higher level.

My docs send me copies of their exams that they themselves send as consultation reports. I asked for them and they were only too happy to comply. The omega here is that I had a lot more informative sessions on subsequent visits and felt my prognosis was more of a two way street.

 

[Clearwater AL]

I’m truly sorry you have been diagnosed with ALS. I assume your doctors sent you reports after your diagnosis or before also? If before, you have a great Neuro Doc. I respect your opinion and your position of wanting to know. It was just my opinion. Many readers may question of me, "Did you request your records?

Yes, I did. I made the mistake of asking my Prime Care Doctor at the VA (Veterans Administration) if I could get my meds prescribed by my civilian neurologist through the VA. She agreed. At my next appointment she pretty much insisted I see the VA Neurologist. I did not ask to see this well known neurologist. I really wanted to keep the VA out of this matter (still do). So… I’ve been dealing with the VA since 1978. They are notorious for losing records, miss-filing records and sending them to the wrong appointment clinic. I personally collected (and paid for) all my civilian doctors records and at my next VA neuro appointment I will hand them to the doctor. “Here, here are my records.” Did I read them? Honestly… I glanced over them because I made several copies just in case the Neuro Clinic at the VA loses the ones I give them. Do I have any more of an idea of what is going on? No.