What questions should I ask the neurologist

Hi everyone

I have an appointment this week to see me neurologist for the first time. I had thought he had been reviewing my data the whole time. Since he was the one that reviewed the sleep study. Come to find out the results had been going to my gp who has no idea what he is reading. My question is this. What are some specific things I should discus with him?

It's been five months with 100 percent compliance an average of 8 hours a night. With little improvement. As a matter of fact I feel worse most of the time. I should note that I have had type 1 diabetes for 19 years so I have a lot of other variables to consider. In fact I have felt the symptoms of severe sleep apnea for years and just figured it was caused by the diabetes. One of the symptoms was for yearsi would wake up with severe body aches for no reason. When I did my study my oxygen level dropped down to 52. I don't know how long but it scares me still. I am convinced that for years my oxygen has been dropping like that and I didn't know it.

One of the other questions I considered is do I need on auto cpap and is it to late now. I know my insurance just rented my machine at the the start. I am happy with it except for it being a straight cpap. From what I have read on here most would suggest an auto machine. So do I need one in my case and if so is it to late now.

Any advise is much appreciated

Get your GP to send him ALL the copies that got they received ASAP. Then get a copy for yourself and take it with you.

Make sure you have a list of questions with space for answers and bring 2 copies and give one to the doc before you start.

If your doctor says it is medically necessary, it may be possible.
(but that can be tricky, depending on the doctor and your insurance)
I would suggest you ask about a take-home overnight oximetry to ascertain you are getting enough O2.
You also may be due for a complete blood chemistry to rule out a deficiency, or other disorder.
The Elite is a very good machine; I have one (backup) myself--now if I can just talk my son into trying it!

I would suggest you ask about a take-home overnight oximetry to ascertain you are getting enough O2.
You also may be due for a complete blood chemistry to rule out a deficiency, or other disorder.
The Elite is a very good machine; I have one (backup) myself--now if I can just talk my son into trying it!

That is one of the things the lady at the DME was concerned about when she looked at my study. She talked about asking him about oximetry test. The blood work I will ask about but the the diabetes they have done pretty extensive test. Especially since I have been complaining for so long about being tired

It's probably nearly (not 100%) impossible to get an APAP machine covered by insurance at this point. See my blog below and look for the post called "Help, I'm stuck with a brick!". You don't have a brick, but an APAP machine is the same HCPCs code as your machine, so your insurer isn't going to want to give the DME anymore money for an APAP. And the DME is unlikely to want to eat 5 months of profit on a more expensive machine. So if you want an APAP, you'll probably have to buy your own. But you only need the blower--you can use the humidifier, hose, etc. you already have. Look on Craigslist or at Secondwind.com. An APAP would give you a lot more data to see why you may still be feeling so tired. In your case, that's what should have been given to you in the first place.

Hopefully the neurologist will be on the ball, but many of us have had less than impressive experiences with so called sleep experts. He may not care about the data at all. Or you may have a really great one who can look carefully at the data to see if it holds any clues. Just don't be surprised if not. This doctor's failure to order an APAP in the first place makes me suspicious.

How does your thyroid check out? It's important that a FULL thyroid panel with Free T3, Free T4, and rT3 be looked at. Too many doctors just look at the TSH number and fail to recognize when it's too high (over 3.0, but the lab norms say over 5.0). With diabetes, it's very common for the thyroid to be out of whack. And you probably need a good cardiology exam, too.

Hopefully the neurologist will be on the ball, but many of us have had less than impressive experiences with so called sleep experts. He may not care about the data at all. Or you may have a really great one who can look carefully at the data to see if it holds any clues. Just don't be surprised if not. This doctor's failure to order an APAP in the first place makes me suspicious.

How does your thyroid check out? It's important that a FULL thyroid panel with Free T3, Free T4, and rT3 be looked at. Too many doctors just look at the TSH number and fail to recognize when it's too high (over 3.0, but the lab norms say over 5.0). With diabetes, it's very common for the thyroid to be out of whack. And you probably need a good cardiology exam, too.

_________________
Machine: PR System One REMstar Auto CPAP Machine with A-Flex
Mask: Swift™ LT for Her Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One Heated Humidifier


The DME says he is really good. At this point I don't even know who called the script in. My endo ordered the sleep study and neurologist read the study and I think my GP might have wrote the script what a mess. As far as the thyroid test I know they have run test just not sure about specific ones. Didn't even know there was more than one test to run on it. I had an episode with my blood sugar that landed me in ICU for a few days the first of Nov when I got to the ER they treated as a heart attach at first do numerous test there too. All good ideas thanks and I will for sure ask about the diferent thyroid tests

Ask him if you are having any breathing stability or carbon dioxide maintenance issues.

Ask him if you are having any breathing stability or carbon dioxide maintenance issues.





Ok does the machine record that. Or is that a test he will have to run

I would suggest you make a list of what you think CPAP should accomplish, what you want it to accomplish & ask him for a list of what he wants it to accomplish for you. Go with pen & paper in hand, with a copy of the list for him (I believe someone already said that). These lists would be things like 'better daytime focus' or 'less headaches", etc. Since CPAP affects each of us differently, your list would be different from mine. If you have a 'should' and 'want' list, then ask him what 'he wants' for you, that gets a good, meaningful conversation started. Browse this forum if you want to see what it has accomplished for some of us. For me, I get to be awake for more of the day. For you, the list might have 'more focused' or it might have 'not falling asleep while driving'. Therapy is as individual for each of us as are the way masks fit us. CPAP therapy should not be, IMO, one size fits all. If you use that approach, you can come up with a good list for your visit, and come away with a working impression of this neurologist. If he doesn't have much to say, I'd be a little worried, since you will be taking with you some 'talking points' on your list.

Good luck & let us know how the visit goes,
Jen

I didn't know that a neurologist dealt with CPAP issues. If so I have an appointment next week for a different issue and if I can hit him up with this as well it would be great.