Deleted

newhosehead wrote:QUOTE: But I'm doing the best I can with the resources I have available.

Yes, Madalot, I certainly think you are. In fact, it seems to me you are doing a rather exceptional job. Hang on.

Jeanette

I concur. In fact, something that Muffy may not fully understand is the precarious position someone with a rare degenerative disorder faces. I know. Been there, done that.

Finding a doctor capable of BELIEVING unusual symptoms is hard enough. But then finding one who can actually help you manage the situation is incredibly difficult. I know from my own experience, I went through numerous doctors who thought it was just anxiety or stress or ... they blamed the patient because they could not find a test that demonstrated an abnormality.

But I *knew* beyond a shadow of a doubt - because of the VERY strange issues I have with my vision (not my eyes, my vision! ). Due to that I *knew* I had to have some neurological problem. (I often see things that are moving smoothly in front of me as if they were in a strobe light. Sometimes I see what almost looks like a "mouse trail" when you enable that feature on windows. You see after images of where the mouse pointer was. I don't see the flashing lights of a police car on top of the car. Instead for me, they are all around the police car in a "cloud" of lights. You don't get these and other symptoms without something being seriously wrong with how the brain processes images from the eyes).

And sure enough, once I saw one of the best neuro-opthamologists in the country, he could spot the problem in a matter of minutes. Oh, we went through all the normal tests to rule out everything else. But finding that answer took YEARS and THOUSANDS of dollars.

With that diagnosis, I *STILL* have to find a doctor who has even HEARD of my problems and understands how to help me manage the symptoms. Fortunately, I did find one who's made a huge difference in my situation. It's not perfect. But he LISTENS, he BELIEVES, and he HELPS me MANAGE the situation. Unless you've walked that particular journey to reach that point, you have no idea just how priceless that relationship can be.

As a result, when I ask if we need additional testing or for details, I do need to be aware that while my insurance funds pay that doctor, the relationship we have is paramount.

So, sometimes it is just NOT possible (under the circumstances) to request more detail or tests or copies of reports. In this instance, someone in such a position MUST rely on the clinical judgement of the doctor. Though I try to learn as much as I can about my situation, I am not a medical professional. My problem solving skills can and should help guide the therapies to help me best manage my situation. My ability to deal with difficult situations can and should help me interact with another service provider (the sleep labs, the DME, the RT). But my own skills do not substitute for the years of training and experience my doctor has, which I need to help me manage my situation.

Yes, I whole heartedly agree Madalot is definitely "doing a rather exceptional job".

Mad-a-lot may have been....she deleted all of her messages on this post....

One thing that I really take away from reading most of this thread...

Treating our disease really is as much an art form as it is a science. So much of this is often a guessing game!

Treatment is as much of a process of elimination as it is anything.

You keep on Madalot. You are doing an awesome job and you have every bit of my respect!

mattman

LSAT wrote:Mad-a-lot must have been....she deleted all of her messages on this post....

It appears that Madalot has deleted ALL her posts, in all threads.

LSAT wrote:Mad-a-lot may have been....

She even tore Muffy's face off on the way out..

Banned wrote:

LSAT wrote:Mad-a-lot may have been....

She even tore Muffy's face off on the way out..

so much for the Miss Cpaptalk competition this year -

no more beauty contests for Muffy

JohnBFisher wrote:In fact, something that Muffy may not fully understand is the precarious position someone with a rare degenerative disorder faces.

Muffy does not need to understand that. The issue that is (was) at hand was the diagnosis and treatment of respiratory failure. This is a common occurence for which the patient was seeing an "expert" (a pulmonologist). There are objective criteria for the diagnosis of respiratory failure and standards of care for its treatment. Consequently, the statement that

JohnBFisher wrote:Finding a doctor capable of BELIEVING unusual symptoms is hard enough.

is irrelevant. All they have to do is order the !*#%ing lab tests and look at the stuff that lights up in red. At that point, a pCO2 > 50 mmHg, VC < 15 ml/kg, NIF < 15 cmH2O with a patient that walks into the office purple cannot be dismissed as having

JohnBFisher wrote:just anxiety or stress

Muffy

jules wrote:so much for the Miss Cpaptalk competition this year -

no more beauty contests for Muffy

Muffy will win as usual.

While she may may fall behind in the talent, evening gown, personality and swimsuit categories, she will surge ahead at the end in "total firepower" category:



BTW, how do you like my new "Cloak of Invisibility"?

Muffy

You are just too cute.

Muffy wrote:

I remember someone else who liked your photo too. What did you do with him?

Think Madi ate some bait fish? Or was it something in that McD's filet commercial?

Oh well YAGE on cpaptalk

Muffy wrote:

JohnBFisher wrote:In fact, something that Muffy may not fully understand is the precarious position someone with a rare degenerative disorder faces.

Muffy does not need to understand that. The issue that is (was) at hand was the diagnosis and treatment of respiratory failure. This is a common occurence for which the patient was seeing an "expert" (a pulmonologist). There are objective criteria for the diagnosis of respiratory failure and standards of care for its treatment. Consequently, the statement that

JohnBFisher wrote:Finding a doctor capable of BELIEVING unusual symptoms is hard enough.

is irrelevant. All they have to do is order the !*#%ing lab tests and look at the stuff that lights up in red. At that point, a pCO2 > 50 mmHg, VC < 15 ml/kg, NIF < 15 cmH2O with a patient that walks into the office purple cannot be dismissed as having

JohnBFisher wrote:just anxiety or stress

Muffy

True -- Muffy doesn't need to do anything Muffy doesn't want to do. True.

But I am not just a screen name. Nobody that comes here is just a screen name. We're real people, living real lives and frequently under a tremendous amount of stress. And even though I was very concerned about doing it in the first place, I shared a ton of information about my situation in that hopes that I could get some insight, input and a bit of support when I got frustrated. Even when posting, I had an inkling of worry about doing it in the first place because it was too specific.

Being treated like an idiot by someone that "really only wants to help" convinced me that I need to back off completely and keep my personal situation off the internet.

And I'm very sorry to those that said they were following my story with great interest. I would not have done this had it not been for the "tone" of that last very long message to me.

And to those that poked fun at me and ridiculed me over this -- You all have to live with yourselves -- I don't. I expected better from supposedly mature adults.

Madalot,

I have fussed at Muffy for his/her tone as perceived by others before. (Kind of a silly thing for me to do, since I've only been around this stuff less than two years, and Muffy has been around forums long enough to remember when Al Gore invented them. ) I know Muffy's brand of humor and communication style can be an acquired taste. But I would like to make the point that none of us have the advantage of being able to look into your eyes when we talk to you, to pick up visual cues, so we can only base our judgments of how to be of help by taking your typed cues and then guessing at your reaction as we type.

I understand perfectly (I think) your reaction to getting so much information thrown at you all at once and its being packaged in such a straight-forward approach. But my opinion is that any roughness or ridicule from any of us that may have seemed to be in our words was meant to be directed at the circumstance of the lack of support you have received elsewhere. Not at you.

Sometimes this forum can be kind of like MASH, the TV show. Hawkeye and BJ get a little sarcastic in the operating room. But it isn't meant to detract from the important work of helping the patients. It was a way for them to stay sane while helping people who needed help. In this case, as I see it, Hawkeye directed some sarcasm at Major Burns (your supposed DME RT) while helping you, the patient. Please don't take that sarcasm personal as being directed in any way toward you. It is just that in this case, you are the only person available for Muffy to give his/her important information to. That is a burden for you. I get it. But I believe it was meant to help you as quickly and effectively as possible. And to motivate you, not discourage you.

I can't constructively comment on the specifics of what Muffy says. It is way over my head. But I've read enough of his/her posts to know how much he/she cares. And I think the humor and approach are partly HIS/HER way of dealing with the stress of helping people dealing with situations they shouldn't have to deal with.

Hope my words don't make anything worse. My heart goes out to you and yours, Kathy.

jeff

Madalot wrote:I shared a ton of information about my situation in that hopes that I could get some insight, input and a bit of support when I got frustrated.

Kathy
Muffy has a unique way of communicating, and it was clearly not the way to make things clear for you. I have taken the liberty of editing Muffy's post to point out some very important insights and input he had in it for you. I hope you will find the energy to concentrate on what he tried to say when he wasn't giving rein to his own brand of humor. I happen to agree with everything jeff said about Muffy, but Muffy is not the issue here. Your health is.

edited Muffy wrote: Important info:
OK, great, scan and post the stuff [edit: no necessarily in public], as well as the PFT results (ask if they did positive expiratory force/negative inspiratory force, and if not, why not) and the sleep studies. Ask the DME for your Trilogy data folder, which should be in a folder called "My DirectView Patients".


You [edit: generic -- your doctors] have to specifically and objectively define:

• The presence and extent of respiratory failure via test results.
  The cause of the baseline oxygen drops.
  The extent of the sleep-disordered breathing: is it apnea, hypopnea, RERA and/or hypoventilation, and central and/or obstructive).

2 different things [to consider]:

• difficulty breathing while awake and
  the events that occur during sleep)

and need 2 different approaches.

I would think that the difficulty breathing while awake should be stabilized first.

Madalot wrote:And it's just kept going on from there. No matter what we've done -- cpap, bipap, bipap w/oxygen, the testing they do isn't giving them the results they want -- keeping my oxygen up at night, keeping my apneas and such down and having me FEEL better during the day. We may have gotten good results for a week or two, but it doesn't last.

What "feeling" is it you're trying to fix? Tired? Short of breath? Sleepy? Depressed?
[edit: the distinctions may hint at the reasons, O.]

Madalot wrote:And this whole thing with my suddenly not being able to trigger the bipap to switch to the inhale pressure -- I think that really got them buffaloed. My DME said he'd never seen that before. I'm not sure anybody is 100% exactly what's going on.

I don't think the triggering system between the 2 machines are all that different.
If everything suddenly got peachy, I would have looked at machine failure or error in set-up (like it was in "Timed" mode).
[edit: considering the sheer nonsense said by your RT about auto, another error in set-up makes a lot of sense]

Madalot wrote:I started out on basic cpap at an inhale pressure of 11. That seemed to work, based on the downloads from the machine and overnight pulse ox testing, for about two weeks. After two weeks, my apneas increased and my pulse ox numbers started dropping a bit.

edited: The people who were changing your machines and their settings did not know this important data: Were they central or obstructive?
How much is "a bit" - edit: numbers are important, especially where oxygenaion is concerned..

Worsening how? More centrals?[i.e. Do the people treating you know that higher pressure may induce central apneas? ]

Madalot wrote:This led them to feel that I could not exhale against that pressure (even with the C-flex at maximum comfort level).

Edit: They should have assumed that to start with -- even people with healthy muscles may have problems exhaling against a pressure of 13.

Madalot wrote:Thus, we determined that I needed more flexibility in treatment than the bipap could provide and my DME and doctor agreed that a ventilator was the best option. Now we're trying to figure out the optimum settings for me.

Well, so far, there's no change in settings that's been done on the ventilater that couldn't have been done with upgraded BIPAP S/T -

Madalot wrote:One of the things we have to keep in mind is that I have a PROGRESSIVE neuromuscular disease, most likely a Muscular Dystrophy of some kind. So even if/when we get me stabilized on settings, we have to keep monitoring my condition regularly to make sure I STAY stabilized. And I probably won't.

The respiratory component of Limb Girdle MD is a little slower than the other forms,
but you need to be monitoring spirometry to track that (easier and less obnoxious than blood gases)
but if the respiratory failure is significant, you absolutely need at least ONE ABG.

How did they arrive at a back-up rate of 7?

I hope you will get the treatment you need.
O.

Madalot, Muffy is the one person on this message board from whom I would seek advice if my own wife or mother were in your situation. But that's irrespective of Muffy's wacky, weird, strange humor that happens to work rather well for me.

That said, we're not all made the same. Good luck with your treatment HOWEVER you decide to approach it.

Muffy wrote:

JohnBFisher wrote:In fact, something that Muffy may not fully understand is the precarious position someone with a rare degenerative disorder faces.

Muffy does not need to understand that. The issue that is (was) at hand was the diagnosis and treatment of respiratory failure. This is a common occurence for which the patient was seeing an "expert" (a pulmonologist). ...

Muffy is correct, from the perspective of the medical professional. They see it all the time. However, it is NOT a common occurrance for the patient. They wish to God they did not have to live through it.

Muffy wrote:... There are objective criteria for the diagnosis of respiratory failure and standards of care for its treatment. Consequently, the statement that

JohnBFisher wrote:Finding a doctor capable of BELIEVING unusual symptoms is hard enough.

is irrelevant. All they have to do is order the !*#%ing lab tests and look at the stuff that lights up in red. At that point, a pCO2 > 50 mmHg, VC < 15 ml/kg, NIF < 15 cmH2O with a patient that walks into the office purple cannot be dismissed as having

JohnBFisher wrote:just anxiety or stress

Muffy ...

Muffy is quite correct. Doctors SHOULD take complaints seriously and order tests to see what objective tests show. Of course, the patients do not know what tests to request. I *do* realize and appreciate (more than you can know) that you try to help Madalot (and others, myself included) know what questions to ask.

For example, though I've not gotten back to you with some data, I did use your questions to help drive conversations with my neurologist. I will get the detail reports, but my life has been way to "interesting" recently to have that as a top priority. However, my doctor is a good doctor ... he ordered tests (in additon to previously ordered tests).

Unfortunately, patients see too many instances of doctors who let assumptions drive decisions, rather than data. I personally had a hard time early in my diagnosis.

Even a layman can tell I have visual problems. I am wall-eyed in my right eye. And if I look up, left, right or down, then you observe my eyes jump around. My eyes do not smoothly follow a moving object.

I don't expect all doctors to finish in the top of their class and be great diagnosticians. But, even with those issues, I saw two neurologists before I found a third who did not tell me it must be "just anxiety or stress". Seriously.

Due to those visual problem, I noted that on bad days moving objects appear as if they are a series of pictures. Or as if you see movement with a strobe light. It should not take a nobel laureate to suspect there might be a problem with my cerebellum !!!

In fairness to the first two neurologists, I do have a scar at the focal point of retina of my right eye. Odd visual issues might be related to that. But I lived with it (and my brain had adjusted to it) for 40 years before those symptoms surfaced. The third did exactly what you say should occur. He ordered the !*#%ing test, by referring me to a neuro-opthamologist. After lots of tests to rule out other obvious problems, the n-o easily confirmed problems with my cerebellum.

So, when a patient with a fairly rare disorder finally finds a good doctor, who listens, believes, orders tests, and helps manage the situation, they tend to be cautious. And if that doctor is known to be an expert ... well, it becomes a dance. You don't want to upset that relationship, even if you know something should be ordered.

It's just my perspective. Of course you are right. The doctor should just "order the !*#%ing lab tests". But sometimes it's not that simple for the patient.

Madalot, I whole heartedly agree with -SWS. Muffy can be impatient and even snappy when we can not provide information that "should" be there. But there is no doubt that Muffy is a *great* resource. And I also agree with -SWS's well wishes:

Good luck with your treatment HOWEVER you decide to approach it.