Which physician to turn to for help

[jules]

large leak under control isn't enough

therapy can be comprised with no "large leak"

now what is the average leak and how does that compare to what the flow rate is for your mask as your rxed pressure - that is a better gunge but still the actual leak graph from the software is best

[DoriC]

An AHI <5 is considered therepeutic but most people really feel better with an even lower number. The software data will give you a much better picture of what's going on. Keep us posted.

[howkim]

I called my PCP and asked if my blood work had included any tests for my "thyroid."
The secretary looked up my records and said "yes" and that everything seemed normal.

There's "normal" and then there's optimal. Get the report from the lab with all the numbers on it and then post the whole test name, your result and the reference range. The reference range is needed as there are no universal ranges for thyroid tests.

[Underdog]

I called my PCP and asked if my blood work had included any tests for my "thyroid."
The secretary looked up my records and said "yes" and that everything seemed normal.

There's "normal" and then there's optimal. Get the report from the lab with all the numbers on it and then post the whole test name, your result and the reference range. The reference range is needed as there are no universal ranges for thyroid tests.

I can do that. So I'll just call and ask the secretary to mail me a copy of the blood work results. Does that sound right?

[Julie]

She'll have to get the OK from the MD first. Have you considered that your tingling could be related to a neck problem - not at all uncommon.

[howkim]

So I'll just call and ask the secretary to mail me a copy of the blood work results. Does that sound right?

Sounds good. Just be aware. I've heard of some folks being told by the doc's offices that "it's not our policy" to give patients copies of their records, lab reports, etc. Well, federal law says that it is. Just tell them that under federal law ("HIPAA" - pronounced kind of like "hypo" but with an "-ah" at the end) you are allowed to have copies of any of your medical records. Just realize that the doc's office is allowed to charge a "reasonable amount" (undefined within the law) for the copying of the pages. In New York State at one time that fee was capped at about $0.75 per page, I believe. It'll vary by state, ans some states may not have caps. Don't go in looking for a fight, but don't let yourself be run over, either. They may even let you have the latest results for nothing. Hope so.

[Underdog]

She'll have to get the OK from the MD first. Have you considered that your tingling could be related to a neck problem - not at all uncommon.

I'll give it a shot. No, a neck problem never really entered the picture. My primary focus has been trying to gain some cognitive/memory capacity back. I need that to solve problems or put tasks in some order like a plan. I have been trying to keep all my posts here in one place because I need to read down from the top to get back to where I am. Even with that I cannot always keep the train of thought long enough. So I do want to try to fix this memory thing .

[Underdog]

I had my first meeting with my sleep Dr. to go over my progress. The good news is that I've used the cpap for over a month and never missed a single day (100%). I average 6hrs and 37min per night. The other good news is that the raised pressure "8" did not show any improvement and I can go back to (the much more comfortable) "6" cmH2O pressure setting.
The average time in Large Leek Per Day is 5 minutes 4 seconds.

On the down side the average a AHI is 19.0
The Dr. seemed puzzled by this number. We looked over my numbers that were generated when I spent the night in the sleep lab and was plugged into the monitors and I had done much better there with only 5.7 AHI. So now the thought is that my Phillip Respironics CPAP might be a dud. He asked me if it was new or used. I tolk him that it certainly looked new and that the hose had that smell of new plastic.

I am unclear about the data that is being collected by my CPAP and what information is available to my sleep physician. I can get some basic information off of the screen of the CPAP. I can read my AHI averages for 7 and 30 days and I can get large leak data and percentage, the pressure and humidity setting. But that's about it. When I mailed in my SD memory card to my DME I asked them to email me the data when they sent it to my physician. They did that, and I looked at the data that was available and it was not really any different from what I could view on the CPAP myself. There was a graph of compliance information but that's it. I thought there was more data available from the CPAP. Do people that use other machines like the Resmed S9 have access to more information. I went to the web site for the manufacturers and could only find generalities mentioned. There were no specifics on the data being collected and in what format it was being reported. Maybe I'm missing something.

oh, I had a long list of questions that I had culled from this board and the physician was kind enough to go through all of them with me. I'll list them here just for the sake of it in case someone else was looking for ideas on what to ask. (sorry for the long post)

1) After 30 nights of CPAP therapy my AHI is still high. What can we do to improve this?
Response: Contact the DME and see if the CPAP is broken

2) Can therapy can be comprised with no "large leak" and what might a solution be?
Response; DME can try another mask

3) My primary concern is the loss of mental capacity (I'm exhausted all the time and my blood pressure off, numbness and tingling in my feet and hands, easily agitated, can no longer find words, inability to learn new things, or spell, eye muscles sometimes have difficulty focusing, shaky hands (handwriting), inability to plan, easily exhausted (shortness of breath when reading aloud). My blood pressure is high, have gastro acid issues, get up to go to the bathroom a lot at night. But my primary concern is the impact on my life from memory loss.
Response; We would hope to see things improve.

4) How long have I suffered from this? Will I be different when I’m “fixed?”
Response: There’s no way of knowing how long you have suffered the effects of apnea. Hopefully you will notice a considerable improvement if the apnea is addressed.

5) What is my long term prognosis?
Response: You should expect to be on the CPAP for the rest of your life. Without the therapy you would most likely face a number of serious health issues

6) Is it a lack of oxygen or a lack of sleep that is so severely impacting my health?
Response: A combination of the two, the apnea restricts oxygen flow to organs in you body that causes your nervous system to go into a responsive state of alarm. Over time this reactive response can create hypertension and other disorders.

7) What about “heart and pulmonary” issues resulting from a lack of oxygen? Is there a way to see if I can start and exercise routine? Get a stress test first?
Response; You are not over weight and seem too young for us to be concerned with these issues.

What is the average leak and how does that compare to what the flow rate is for my mask (as your rxed pressure - that is a better gauge but still the actual leak graph from the software is best)
Response; your CPAP is self adjusting to mask pressure. (note; I could never find any data on “average leak”, either from the physician or the DME. I have large leak data so maybe that is the same thing)

9) Is there any advantage to switching to a auto adjusting CPAP like the Resmed S9 AutoSet?
Response; Because we did not see an improvement in the AHI when the pressure was raised from “6” to “8” I do not see any advantage to using a self adjusting CPAP. We have found that many of these new CPAP technologies have not proven themselves in a practical setting.

10) I’d like to get a copy of "Encore Viewer" software for my computer so that I can know on a day to day basis how my therapy is progressing. Could I ask about having a prescription written for this software. That way if I tried a new mask or slept in a different position I would be able to tell I was improving my therapy
Response: Lets ask the DME to see if the CPAP machine is working properly

11) I read about a brain disorder that is associated with alcoholism called “Wernicke brain disorder” Studies reveal that the disorder is a result in the loss of mammary brain cells and the symptoms match many of mine including the tingling feet and hands. The study showed that OSA patients that were not alcoholics had in some cased been diagnosed with the same disorder. Are you familiar Wernicke–Karakoff and ever had a diagnose.
Response : I am familiar with Wernicke’s disorder but never had a diagnosis.

12) The higher pressure causes more leaking that blows in my eyes and irritates them. The bridge of my nose is painful when the mask is pushed down far enough to stop the leaks, the higher pressure makes my stomach feel bloated with air in the a.m. ) Can I go back to the lower pressure? Response: Yes

13) Do most patients tell friends, family, coworkers, employer? Response; Some do and you might be surprised at how many people know of someone with a sleep disorder.

14) Could I rule out a thyroid disorder. I’m aware of neck soft tissue ultrasounds, RAIU (radioactive iodine uptake), thyroid CT scans and guided ultrasound FNA (fine needle aspiration) biopsy.
Response; That would be something for you to discuss with your primary care physician.

[Julie]

Hi, it's not Wernicke-Karakoff, but Korsakoff, and he'd be a falling down 24/7 drunk to have it. Stop telling people what they could have (and scaring the daylights out of them!

[M.D.Hosehead]

U.D.

IMO, your neurologist is the physician to turn to. You have neurological symptoms, your neurologist referred you to the sleep lab, you are treating your sleep apnea now, yet your neurological symptoms are still there. Your symptoms are serious and could be due to a hundred things other than sleep apnea. Sometimes potentially reversible neurological symptoms left untreated can become permanent. Collect all your data (CPAP data, blood tests, everything you have), see the neurologist and tell him/her your symptoms aren't better, and ask what needs to be done to try to pin down a neurological diagnosis. If your neurologist doesn't respond, talk to your primary doc about seeing a different neurologist.

[Mr Capers]

Hi Hosehead,

An encouraging note. My experience is that cognitive function, short-term memory, etc. all improved over a several month period. The improvement was much more marked when my prescription was correct. That took months, and was my sleep doctor's fault that it was so delayed.

Use the search box at the top of the home page on this forum to search for Encore Viewer. Get the software. You need it to know what is happening while you are asleep. The machine monitors, and records, a great deal of data.

It is such a great feeling when the fog starts to lift. Persevere!

Mr Capers

[Underdog]

I have an appointment with my neurologist on July 27th.

But here's a question for now: Why would my AHI drop to "5.7" running a pressure setting of "6" in the sleep lab but at home the CPAP says the AHI is 16 to 19. The report from the initial sleep lab study (no-cpap) said I had a AHI of 72.
When I called the DME and tried to schedule a time for someone to come out and check the Phillips/Respironics CPAP for problems, I recieve a somewhat hostile response, "we were out to your house only 10 days ago and there is nothing wrong with your machine."
I never said there was anything wrong with the machine. My sleep physician was the one that made this request. I know nothing about these machines, but I'm trying to learn what I can.
What am I doing wrong here? I must not be managing my health care very well in this situation.