Medical Tests (rant again)

[Mike in Maine]

Does a diagnosis of MND, mean you automatically become a lab rat for every specialist doctor out there. I figured once I was diagnosis with this beast that the tests were over or at least would slow down. Today a PFT lead to sleep study with me fighting it the whole way, I lost and will have the study, don’t even know how I lost. Do the tests ever stop? I know that in the long they may be for the best, but they suck

Mike

 

[Mike in Maine]

P.S Never take your wife to your Doctor Appointments, The doctors always listens to her over me, that's why I lost to the sleep study. Go figure

 

[LoveMyKids]

I feel like it's important to get good information on why a test is being requested. Some tests provide valuable info and some are a waste of time. Maybe you could express to your loved ones and your doctor how you feel about testing and promise to consider all test requests with an open mind. That might be reassuring to your family. Easier said than done, I know. Hope the test goes well & that you win the next test battle.

 

[dalvin]

Mike, the sleep study is sometimes used to determine the need and effectiveness of a bipap. At least according to the respiratory therapist at the Richmond va hospital. They were going to try one on me until I told them that I was already using a bipap and that I can not lay flat without getting choked an coughing a lot

 

[IhavePLS]

I'm certain that Bipaps have their legitimate and rightful place in medicine, BUT:

I can honestly say that I've never met ANYONE who went for a sleep study who did not ALSO leave with a cpap machine. This may be an issue with a specific provider in my area -- but I don't personally know anyone who has checked out of a sleep study sans a shiny, brand new cpap or bipap machine.

Mike, you're right on - as usual. My wife and I have spent more money on duplicative lab deductibles and copays than Carter has pills. How many CBC w/ diff and sed rate needle sticks can these people do anyway?

Really...the issue is one of proper coordination of care -- which is mostly non-existent, because coordination of care ("medical home") costs so much, with no real monetary incentive on the part of the provider who is coordinating care. Therefore, when you see too many specialists (sometimes unavoidable), you can let the testing games begin.

 

[gooseberry]

Mike I would make sure whomever reads your sleep study and makes recommendations understands als. You dont want to end upwith a closet of bipap machines if you could have gotten something like a trilogy and just adjusted it as you went along

 

[Eric2266]

Mike, I spent a week at Mayo to confirm my diagnosis and they sent me to a sleep study as well. They said that since I demonstrated issues with my throat a machine may help me get better sleep. I've been using it since June and can say that I don't really notice any change . . As for the multiple tests. Because I cam able to print out my test results from Cleveland Clinic and ask for all of my written results when I have a hospital stay I have a binder that I keep them in and when a doc wants to run a test I show him the previous test and ask specifically WHY the new test should be run. Usually they will back down and accept the test that was run just a few weeks prior but when they don't, they will give a solid reason and allow me to better manage my healthcare and understand exactly where they are going with it. Remember that the only person that is in control of your healthcare is YOU!

 

[Herc]

Hi,
I am new to this forum. I was diagnosed in March 2010. Being active duty I had to submit to all of the testing as well as being the Drs. teaching aid for everyone on the floor about Babinski reflex and other oddities. I did feel like a Guinea Pig. But at the same time for health providers to experience these irregularities first hand is a terrific benefit especially in a military hospital.
Now that I am retired I am able to politely decline.

 

[Clearwater AL]

Herc, have you filed a claim with the VA for PLS?

 

[Herc]

Hi Clearwater AL
I have filed for ALS please excuse my ignorance but what is the difference between ALS and PLS?

 

[Mike in Maine]

Herc,
PLS is Upper Motor Neuron (UMN) only, ALS is both Lower Motor Neuron (LMN) and UMN. As retired Navy, I also suggest you engage with the VA they have great resources, but can be a little pushy. Call your local Paralyzed Veterans of America representative, they are great and will ensure that you get all that should. They’ll also spend the time to explain things, which the VA with all their good intentions isn’t the best at.

Mike

 

[Clearwater AL]

Herc,

Edited. Ok, I read that you have been diagnosed with ALS... not PLS.

This being a PLS Forum your first post got me confused.

 

[Mike in Maine]

Al,
Feeling a good old war movie marathon coming on again. Been one of those weeks

Mike

 

[Graybeard]

Upon diagnosis in December, UC Irvine prescribed a bipap, as during sleep the blood oxygen can go down into the 70s, the Neurologist said. The brain shuts down at about 65%. The mask forces me to sleep on my back, which I had never done. The first night was marvelous, and it's been that way since. It's like hypnosis, it puts me to sleep so fast. My oxi is 93-95% with it, the same as upright.

Wanting to end the $60/mo bipap rental prompted me to ask VA for a bipap. They insisted on a sleep study. Because of ALS, the Doc had it set so high, it was blowing air into my stomach, and I couldn't sleep. They turned it down to half, and I finally slept.

They issued me a machine, which was still set too high. The tech who picked up the rental unit attends about 20 PALS in this area, and got Dr. permission to turn it down to the level of my first machine. He said if it is not comfortable, the patient won't use it... I sleep good.

VA issued me a second machine, which they said is better. It is also set too high, so I will take it back for adjustment at my next appt.

GB

 

[old dog]

Hi, I have PLS--Mike. I'm the exception--had a sleep study two years ago and passed. I had told the pulmonologist prior to the test that I didn't feel I had a breathing problem, but my neurologist felt she wouldn't be doing her job if she didn't have me checked. I didn't do well on the FVC testing, because I can't make a good seal on a blow tube. After the sleep study showed no drop in oxygen levels when sleeping, the pulmonologist recommended that any further testing be done by sending me home with an oximeter that has the capability of recording oxygen levels while sleeping.