If CPAP isn't working GET A SECOND OPINION

[Minky]

I was diagnosed with UARS in November 2014. The sleep study also showed some PLMD. I was prescribed an APAP at my own expense since my insurance wouldn't cover CPAP for my 1.1 AHI. I now think that the sleep doctor just wanted to get rid of me and also made it clear many times that I was to go to the DME of her choosing. They also tried to withhold my prescription because the DME had it, so I didn't need it, blah blah blah. I screamed about my legal rights, got the prescription and bought from CPAP.com.

I felt a little bit better for a while, but now think that was both the placebo effect and the hum from the machine that made me think I was sleeping better. I was back to being a zombie in no time.

I tried to follow up with the sleep doctor. Both unresponsive and rude. Plus, I didn't buy my equipment at her DME, so I was a bad patient. She actually asked me if 'we were done here.' Yes, we are.

Undaunted, I made an appointment with an ENT at another hospital. I wanted to see if there was a structural reason that CPAP wasn't working. He was waiting for me when I got there, but 5 minutes later was called to an emergency surgery. His fellow, who knew what she was doing, used the scope and recorded it for him to review later.

What a saint he was. He called me to apologize for the emergency surgery and said there was nothing wrong with my upper airway. Said that it was not okay that I was still tired and had spoken with a colleague in neurology. With my permission he would have his staff set up another sleep study and set up an appointment with the neurologist. I agreed.

I saw the neurologist last week. I expected a quick visit that would result in a prescription of Mirapex and/or Ambien.

I was wrong.

My appointment lasted close to three hours. He told me there was nothing worth looking at in my sleep study. He questioned me extensively about a gym injury I had 15 years ago where I lost most of the feeling in my legs for a few weeks. He asked me about the constant numbness in my hands. He asked me about my eyesight, which is 20/10 until I have episodes where it feels like I'm looking through Vaseline. He extensively tested my reflexes and said that things weren't good.

I have multiple sclerosis.

It's not confirmed yet and the insurance company won't pay for meds ($60K per year) until it is. I'm going for a brain/spine MRI next week. Then I'm seeing a neuropsychologist to check for cognitive impairment. After that I'll see the neurologist again to get the official diagnosis.

He figured it out inside of 5 minutes. He's been a neurologist for 40 years, which I'm guessing is around 39 years and change longer than the other doctor.

So, please follow up with another doctor if you're not getting better. A lot of doctors love to get rid of you by making you feel crazy. I'm so glad I kept going even though I've met many horrible doctors during my 20-year odyssey to figure out what's wrong with me. My mother let doctors beat her down and felt like she was crazy. Turns out the treatment for her 'midlife crisis' was a heart, liver and kidney transplant that would make her healthy enough for a stem cell transplant. She died at 57 of AL amyloidosis, too sick even for organ transplants.

I'd like to thank all of the great people on this forum who helped me through my CPAP journey. I couldn't have done it without your help.

Thanks for listening and thanks again for all of your support over the past several months. I wish all of you all the best.

I'm off to join an MS forum. Alas, I don't think there'll be anyone like Palerider there .

[BlackSpinner]

{{{{ Hugs}}}}

Thank you for sharing.

[chunkyfrog]

The correct diagnosis may not be what you expected, but it will lead to appropriate treatment,
which is getting better every year. This sounds like a good thing!
The takeaway, as you indicated, is to fight for yourself. You go, girl!

[Janknitz]

Wow! You found a great neurologist.

As soon as you said "He questioned me extensively about a gym injury I had 15 years ago where I lost most of the feeling in my legs for a few weeks. He asked me about the constant numbness in my hands. He asked me about my eyesight, which is 20/10 until I have episodes where it feels like I'm looking through Vaseline." the MS bells started ringing in my head even though I'm not a doctor (but I worked in a licensed healthcare profession doing neuro rehab for 20 years). Your first doctor MISSED it. You need to let him know that so he won't miss it next time.

I think the title of this thread should be something different" "If CPAP isn't working, get a second opinion". Most of us would have recognized Doctor #1 as a jerk, but very few of us would have persisted to find a better doctor because they are few and far between and insurers make it difficult for vague symptoms like fatigue.

[JDS74]

Minky:

Its really great that you finally have a real diagnosis and can proceed with proper treatment.
I've been there and done that starting with meds that cost $7,000 a month and switching back and forth until I'm now on a single high cost med that is only $3,500 per month and I'll be on that forever.

I'm still looking for that miracle doctor who can look at my test results, journals, and scans and say "Of course that is ......!."

So far I've got cancer fixed and in remission, complex sleep apnea somewhat under control, and miscellaneous other frailties. What is still a mystery is episodes that are like hot flashes happening about 20-25 times a day for the last 11 years and which can be initiated by a change in position, PLMD under control from an untreated level of 70 per hour down to only 1 or 2 per hour, and spontaneous night time arousals unrelated to any breathing disorders of 15 per hour making sleep really fragmented.

Got through all of that by pushing and asking and getting second opinions and having, mostly, doctors who may not have had the answers but were supportive and helpful . Along the way, I fired quite a few who were just plain wrong and, like your first one, downright unhelpful.

Best wishes on your journey.

[kteague]

It is such a relief when we find a doctor who we feel is truly in our corner. I'm glad you've found that someone. I hope you get some answers and can move forward with appropriate treatment. Do make sure you new doctor is informed about the UARS and PLMD. Having multiple diagnoses can complicate the picture, but I have a feeling your new doc can handle it. Good luck.

[Julie]

Janknitz - MS can be really hard to diagnose even for well trained/educated neurologists... Minky sounds like she has some classic symptoms (eyes, numbness, etc.), but many don't, or else they only show up individually, sometimes years apart, or together with other symptoms that look like conditions the patients already have because the symptoms make sense (with the ones of the first condition). It's quite a messy thing that way.

[Pugsy]

Minky,
I hate to hear this but at least you have a name and a face to fight now. It just happens to be a pretty ugly face and name. I can't think of anything suitable to say so I will just send you a big hug and a special prayer that your upcoming battles are battles that you win.
Also sending you a big Sarge hug and kiss (he likes to kiss ears)...from my black Pug. Sarge loves everyone.

[HoseCrusher]

You may want to review the work being done by Dr. Terry Wahls...

[Papit]

Minky, thank you. We wish you nothing but the best going forward. That's a very difficult interim diagnosis that was just laid down. Nonetheless, at least in terms of good doctoring and proper medical attention, it looks clearly like your very tough road has made a decisive, more favorable turn. And that happened not because of magic but because of your persistence and strength of character. You're an inspiration, girl. Please come by and say hello whenever it feels timely and let us know how you're doing. Love ya.

[Julie]

All this being said, let's not turn around and blame everything on the MS - her Cpap experience may still need tweaking in itself if she continues to use it (just as we tell people not everything's about Cpap when they ask about other symptoms at times).

Minky I hope things go smoothly for you and that having found an answer now will help make them easier to deal with. Good luck!

[SewTired]

Hang in there Minky. At least you now know what you are dealing with even though it's a tough road to trudge.

[Minky]

Thanks very much to everyone for your kind words and advice.

I'm very lucky to have family and friends who will take care of me if and when the time comes and I'm optimistic that my life will not change drastically, at least for several years.

Please send my thanks to Sarge. Pugs are the best. I have two fawn pugs myself. And a black lab. And four rotten cats who love to torment the dogs.

To Chunky Frog - thanks for sharing your cancer experience with the forum. You've been a real inspiration to so many people during what must be one of my the most difficult times of your life. I'm glad to hear that you're doing well.

Thanks again. I wish you all the best.

[Papit]

Everyone's different. It could be many, many years before significant symptoms manifest and even they may be relatively milder than what others have experienced. Research and treatment these days are more comprehensive and improving all the time. All the best and do stay with your sleep therapy. That could well be a big help for you.

[JDS74]

Just began reading a new book that is related to the issue of getting to a diagnosis when the first doc hasn't, won't or can't.
It's about taking charge, something many here are familiar with.

"The Patient Wiil See You Now"
By Eric Topol.

I'm only a few pages in but it is fascinating.