Time for more Poking and Prodding

[Vincent]

So it's off to Sunnybrook in Toronto for for yet another round of EMGs and NCVs( poking and prodding). I'm hoping they got all of my other Dr reports this time. Do you ever reach a point in this where they finally just leave you alone? It's getting fiercely tiresome.
Vincent

 

[cheerleader]

Vincent, I'm curious why they are still doing another round of EMG's if you are already diagnosed. That's a lot to put you through for what?
Good luck.

 

[Atsugi]

Indeed, once the diagnosis is confirmed, the only prodding left might be breathing testing.
And frankly, that, in my mind, is a waste of time and money.

One thing about medical testing: Never do a test unless you plan to do something useful with the results.

That's not to say don't go. In fact, I think every chance you get to interface with really smart medical people, you should do it.

 

[davbo49]

they did me over and over again. they said they was trying to get a time line. most likely it was the money lol

 

[Music67]

The dr. at the VA expressed concern after my breathing test strength dropped 2 per cent. Suggested I get ready for a feeding tube. A week later at Virginia Mason hospital my breathing went up over 5%. The Virginia Mason dr. said the VA dr should not have said anything over a 2% change. By the way I had used diff. equipment between the 2 VA visits where results were compared so that can affect results too.

 

[Music67]

I posted a response here a few hrs. ago but it hasn't shown up. Who do I email about these things?

 

[Graybeard]

Don't use Dr period, or it will go to mod for awhile.

 

[Nuts]

Oh Davbo, really, a timeline? That makes me so made. Given that the rate of this monster is never consistent, it sounds more like you were being used as a labrat than that any predictive timeline could have been established.

Initially my husband expected and even wanted additional EMGs to gauge his "progress", but his doc explained that treatement from here on out is based on symptoms, not numbers (for instance, you need a PWC because you can't stand, not because of what the EMG says about your muscles), so there is no value added to the additional torture.

Vincent, that 2% drop could also have been because of something as simple as you being a bit more tired that day. I'd definately go with the ALS center!

 

[Nikki J]

There are so many things that can make a difference to our pulmonary numbers. Fatigue is one. Another is if you have recently eaten. Don't let them test you right after lunch.
Richard when something goes to mod it will be reviewed as soon as Beky or I get a chance. Beky has been solo for the last week and yesterday I was just back and very jet lagged. Emailing does not make mod happen faster. We do the best we can. Btw Graybeard is right about the mod word. I wish it were not on the list people use it so often here!

 

[davbo49]

Oh Davbo, really, a timeline? That makes me so made. Given that the rate of this monster is never consistent, it sounds more like you were being used as a labrat than that any predictive timeline could have been established.

Initially my husband expected and even wanted additional EMGs to gauge his "progress", but his doc explained that treatement from here on out is based on symptoms, not numbers (for instance, you need a PWC because you can't stand, not because of what the EMG says about your muscles), so there is no value added to the additional torture.

Vincent, that 2% drop could also have been because of something as simple as you being a bit more tired that day. I'd definately go with the ALS center!

yea with the smile on there face why doing the tests on me. i think i know what's going now lol and when they hit you hard an it hurts real bad. they was getting a big smile and say, im sorry. well im not a dr but i am a big baby.

 

[Music67]

Had no idea . . .I will be careful about the doctor word from now on.

I know you administrators spend a lot of time monitoring these threads and I appreciate it. So I guess Nikki or Becky are the go to people when we have a question. That's good to know. Thanks to both of you for your efforts.

 

[4tloml]

Don't know if this would apply, but my PALS had EMG/NC done multiple times before final diagnosis. After diagnosis, we were told other things (esp. diabetic neuropathy) kept the picture from being clear the first time, but by the last time, progression had occurred for a definite diagnosis. And at that point we were told he'd already had ALS for 18-24 months. It sounded as though when there are multiple conditions, the WAY in which the EMG/NC studies change help in diagnosis. So for my husband, 1st doc said "ALS," 2nd said "not quite ALS," and a year later, 2nd said "ALS," too, and 2nd doc said it was based on progression of symptoms plus the changes in EMG/NC over time.

How long since your last set of tests?

 

[Music67]

I haven't been tested since August. Was supposed to go in last month but due to VA bureaucratic screw-up it didn't happen. Now it won't be til Jan. 13th so my fiance can accompany me.

 

[Janie H]

Vincent, they never really leave you alone I'm sorry to say, they come to my home and mess with my breathing machine, caseworker asking questions, a nurse changed my PEG tube yesterday. They want me to have someone to come and sit with me a couple of days a week. I'm a private person, it's been hard.

Janie