Letter to a sleep clinic

[SquirmingSusan]

I mentioned in the "favorite doctor" thread that I really needed to write this letter to the sleep clinic that first treated my RLS. I'd value opinions on it before I send it off to the clinic manager.

Dear Dr. -------,

I am writing about the treatment I received at your clinic from November of 2006 through March of 2007. I had an initial visit with Dr. Mulrooney, who was actually very understanding and kind, and diagnosed me with RLS. He gave me a starter pack of Requip and had me schedule a sleep study in December, with a follow up appointment afterward.

Unfortunately, about a week before that follow-up appoinment, I started experiencing severe pain within a couple hours after taking the Requip. I was also having much worsened creepy-crawly sensations, along with an increased need to move to the point where I thought I was going to crawl out of my skin. I put in a call to the clinic, but there was no doctor on call who could help me out. I did get a call from a nurse who thought that it might help to cut back on the Requip, but admitted she didn't know anything about it.

Being that I was in horrible after taking the Requip, I stopped taking it. Then my body went crazy. My legs felt like they were on fire, and I was squirming out of my skin. If someone had seen me they would have thought I was having convulsions. I believe the medical term for this is “akasthisia”? Fortunately I was at that time a participant in the RLS.org on line support group, and had heard a lot about augmentation, and had learned that for severe augmentation it is usually necessary to switch medications to an opiate like codeine or opioids like hydrocodone or oxycodone.

(Since I couldn't get help from your clinic until Monday, I got an emergency appointment with my primary care physician. I was in horrible pain, but she just gave me a lecture for about an hour on the evils of taking St. John's wort. I repeatedly mentioned that I was in PAIN, and she told me she couldn't give me anything because I was taking St. John's Wort. I got the record from that visit and there was nothing about pain at all in the doctor report. I had heard that it was difficult to get treated for pain, and this was just my first taste of that.)

Between that Friday appoinment and the Monday appoinment at your clinic, I took some of my husband's hydrocodone that he had left over from his recent treatment for leukemia. It settled everything right back down. I was hopeful that at my Monday appoinment with Dr. Mulrooney, he would write me a prescription for a painkiller to get me through the worst of the augmentation. When I arrived at the appoinment, I found out that it was not with Dr. Mulrooney, but with a nurse practitioner who was only interested in going over the results of the sleep study and “treating my apnea.” She seemed completely unable to shift gears and give me appropriate treatment for the extreme misery I was experiencing with the augmentation. Furthermore, when I read the sleep study myself, it clearly showed that I do not have obstructive sleep apnea, and I didn't even snore during my sleep study. I kept asking her to treat my augmentation, and she finally asked me angrily if I wanted my own prescription for Vicodin. I said yes, that would be helpful. She also gave me a prescription for gabapentin, which at that point, did nothing for the much-increased RLS.

I got the prescription, and scheduled an appointment with Dr. Mulrooney for a few weeks later. A couple days before that appoinment, I got a phone call from the clinic saying that Dr. M was ill and needed to cancel the appointment. I rescheduled for a couple weeks later. Meanwhile, the NP who gave me a prescription for the Vicodin hadn't given me any refills. The Vicodin was working well to control my now much worsened RLS. When I called about it, the nurses said they would only give me enough to last until the rescheduled appointment. This would have been fine, except that the rescheduled appointment was once again cancelled by Dr. Mulrooney, and they wouldn't be able to reschedule for another couple weeks, during which time I was going out of town, flying on a plane and sitting in workshops for a week. The nurses said that they couldn't refill the Vicodin because “I” had cancelled 2 appointments!! I ended up not getting medication before the trip because of these cancellations and because the nurses were very bad about returning phone calls.

I just need to emphasize at this point that severe, augmented RLS is an agonizing condition and it requires aggressive, responsive, compassionate treatment. This is exactly what I wasn't getting at your clinic. Your nursing staff acted like I was an addict getting my fix, rather than a patient in distress trying to get relief.

When I finally saw Dr. Mulrooney again, I was still in agonizing pain 24 hours a day, 7 days a week. He said that hydrocodone was fine for RLS, but since I was having pain all day long, he wouldn't treat that and I would need to go to a pain clinic. I asked about tramadol as an option, and he went off to look it up, and was happy to give me a prescription for that. Unfortunately it didn't work for me. When I took it, the pain morphed into the creepy-crawlies. When it wore off, the creepy-crawlies morphed back into the aching, pulling pain.

To me that was just WRONG because the pain had come about as a direct result of taking Requip, a drug which he prescribed for me, and Dr. Mulrooney or others in your clinic should have been prepared to treat common complications of that drug.

From then on, I had to get my hydrocodone on the internet until I could get in to see someone at a pain clinic. I would, have killed myself if I hadn't been able to get relief! Fortunately I was able to get in to the pain clinic within about 6 weeks. I've had a good experience at the United Pain Center. They have treated me very well from the beginning, even though it took a bit of educating them that RLS can be painful, and that opioids are one of the more effective treatments of RLS. Since the second month of treatment there I have taken methadone for the painful RLS symptoms, along with physical therapy with Alpha Stim, which has decreased the level of pain quite a bit.

It is now over 1-1/2 years after the augmentation from Requip, the symptoms have subsided quite a bit. But it is still clear that I have permanently worsened RLS as a direct result of taking Requip. The pain and pulling sensations have settled into a circadian pattern instead of being an all day affair. Now it starts mid afternoon and lasts until after midnight. I still have myoclonic jerks all day long, during waking hours, which is something I never had before taking Requip.

So now I am being treated for my RLS by a pain clinic. I like the doctors and nurse practitioners there, and am always treated with kindness and respect. However, they are not sleep doctors and do not treat the insomnia and delayed sleep phase that goes along with RLS. Nor do they treat the excessive daytime sleepiness.

After Dr. Mulrooney told me that if I needed painkillers, I would need to go to the pain clinic, I stopped coming to your clinic. I scheduled an appointment with HCMC and saw Dr. Mark Mahowald. It was a long appointment and I got the impression that these doctors might actually help me out with the circadian rhythm disorder and the daytime sleepiness. I procrastinated making a return appointment because I was finding it difficult to keep the sleep journal he had asked for. However, after a couple months it became apparent that they hadn't billed my insurance. (I don't return to a clinic until I know that they can bill things correctly!) It's a year later and after two 3-way calls between my insurance company and the billing office, they still haven't billed it correctly. I probably need to write to their administrators as well, because I really think they have the knowledge to work with me.

So basically, here I am with my RLS being partially treated, and nowhere to go to get the respectful care that I think I deserve. Your website has such an accurate and succinct portrayal of what RLS is about, and describes my RLS perfectly. Yet doctor after doctor just doesn't understand that RLS can be painful, that RLS can last all day and all nights in extreme cases, that RLS can contribute to a sleep delay in which it is much easier to sleep in the early morning hours until noon or so, and that refractive RLS can quite appropriately be treated with strong painkillers.

I recently went to a neurologist locally who insisted that the RLS wasn't causing my sleep delay, and ran a multitude of blood tests for various pain conditions I assume, an MRI on my back (yes, I've had 2 back surgeries, but and back surgeries are known to worsen RLS, but what am I supposed to do about that?) This is about the third time in the last year that doctors have have analyzed my blood looking for something that isn't RLS to account for my very typical RLS symptoms. The only thing that's ever found by these tests is that my ferritin is always low (last time it was 12) and that my thyroid is low or high or all over the map.

Recently I heard of woman who was delighted with your clinic in Plymouth. She saw Dr. Fox and was absolutely thrilled with knowledge of RLS, her knowledge of the Mayo Clinic Algorithm and the medication treatments recommended therein, and that yes, if needed, she would prescribe painkillers to treat her RLS. Apparently she also understood the risk of augmentation, and hopefully knows how to treat it when it does arise, and that when it happens, it can be very, very severe and need immediate, aggressive treatment.

I am writing this in the hopes that you can reassure me that if I were to return to your clinic for treatment of my RLS, insomnia, circadian rhythm disorder, and excessive daytime sleepiness, that you would treat me respectfully, and my sleep disorders aggressively. I would also want assurance that if I have an urgent issue that I would get a timely response. I am quite disabled by this condition and need help. I'm hoping that someday I'll be able to get back to work in ministry, and get up in the morning and be able to stay awake during the day.

I apologize for the length of this letter, but I'm reluctant to cut anything out because I think you need to know what many of us RLS patients go through when seeking relief from our symptoms. I'm still active on that RLS forum that I mentioned earlier (I'm a moderator now) and my story of going from doctor to doctor seeking appropriate treatment is quite typical. That needs to change.

Sincerely,

Rev. Susan Burns

So whaddayathink?

[ViewsAskew]

I read it early in the morning when I wasn't too coherent so waited to reply. I appreciate you posting this, as I've needed to do this vary thing in the past and have not done it. You go, girl...as the saying says

There are three types of comments I have. The first involves general editing. For example, you have a few sentences where you are missing a word, "Being that I was in horrible after taking the Requip, I stopped taking it." I think you want the word "pain" added. So, if you want those types of comments (it is easier to edit someone else's work than your own at least from my perspective), I'll be glad to send you a draft of what I noticed.

I tend to prefer people help me with the tenor or scope of writing, not the mechanics, so, here are the two things that struck me about the letter from a critical perspective.

The first relates to the general structure or ordering of the story. It sounds like you chose to put the whole story in logical order, and most times I followed just fine. Sometimes, though, I got a little lost between the narrative of what happened to you versus how you felt about it. I think I might have preferred a shorter, tighter narrative - I went here, she did this, then this happened type thing, with the commentary about how it hurt you or how you felt about the treatment all at the end. It may provide more punch to how it impacted you.

The second is related to the last point, but is a point of its own. I am worried about the length and that the reader may feel lost in it and not give it the attention it deserves. A good manager will regardless, but as a writer, maybe you can help the reader along a bit more by paring it down some.

Hope this helps some.

[Sojourner]

SS, Very difficult to "critique" your letter. I too have written something similar but also different. Couple of things. The 1st is perhaps length but... you have a lot to say. Don't know, if as Ann said, you can stick to either the factual treatment issues as the main focus with perhaps just a brief, concise summary of how this makes you feel and how it's different than what you expect (ed) and/or were led to expect. Also, after giving them a pretty good thrashing (and perhaps well deserved) the idea that you would go back is.... why? Your letter does seem, to me, about burning bridges not making nice.

I really like this paragraph:

"So basically, here I am with my RLS being partially treated, and nowhere to go to get the respectful care that I think I deserve. Your website has such an accurate and succinct portrayal of what RLS is about, and describes my RLS perfectly. Yet doctor after doctor just doesn't understand that RLS can be painful, that RLS can last all day and all nights in extreme cases, that RLS can contribute to a sleep delay in which it is much easier to sleep in the early morning hours until noon or so, and that refractive RLS can quite appropriately be treated with strong painkillers."


For me, other than the first sentence, this would be a good lead in to much of what your dissatisfaction is about and how what you received is very different than what they say you will get or was led to expect. Anyway, I liked that.

I'm sure you have agonized over getting this letter right and while I, or others, might have ideas of how we would do it, if it from your heart and it sounds and feels right to you than go with it. I say this because if you do go back or you are contacted and your letter is a starting point or ending point for conversation than the words and feeling will be what you have written and not the result of an exercise in trying to be "politically correct" or whatever.

You do deserve better.

Best wishes,

M.

[SquirmingSusan]

Thank you Ann and Mark for you comments. I really appreciate you both taking the time to wade through all that. As I'm sure you could both tell, that was a rough draft in which I wanted to put together all the details of my experience with that clinic.

Yes, Ann it would be great to know of all the little missed words and misspellings that are in there. If you don't want to do it, though, I'll understand and I can run it past my daughter. I'll probably do that anyway because she is a dynamite communicator and is very good with words and ideas.

It's amazing how much better I feel just having put all that down on paper. When someone called me from that clinic to get me to pay the $50 I owed, I explained what had happened to him. He was shocked and made me promise to write to the clinic director, and assured me that he would want to know this stuff. So as to your question of "why" Mark, this serves a dual purpose. I really think the clinic needs to know about what happened to me, and I really need to get over my feelings of victimization and stand up for myself and others who are mistreated this way.

For me, advocacy starts at home, and we can talk about it all we want, but if we let the medical profession get by with not treating our pain or other symptoms, not returning phone calls, shuffling us off onto other doctors because they don't want to deal with us - It's just going to keep happening.

Mark, for me it's not about burning bridges; it's about, hey this bridge just fell into the river, now what are we going to do about it? I'm giving them a direct challenge to do better by me. Why would I want to make nice? That doesn't serve any purpose here.

Anyway, I'll be working on it more over the next couple days. I like the idea of shortening it a bit, talking about the "facts" of what happened, and then summarizing my feelings about it at the end.

If anyone can give me specifics about what is confusing, I would appreciate it.

Thanks again.

[Polar Bear]

Susan, I know exactly what you mean about not wanting to cut anything out of your letter cos there is so much that you wish to say, and that you wish to make very clear.

Please, please do not take offence with what I am about to say, but I also think the length of the letter could be an issue with the reader. I would be just afraid that the reader would start to 'glaze over' before getting the the end, and perhaps get the gist of the letter but not pay the due attention it deserves.

This may sound stupid, and everyone please feel free to agree but what about two separate letters: one very specific (I also liked the paragraph quoted by Sojourner), and a second letter that could elaborate.
This idea just came off the top of my head, so anyone may feel free to tell me to 'wise up'!!

[pedrime]

IMHO, as much as you want to provide every detail, they will not take the time to read every detail (esp. if the staff was as apathetic with your treatment as you describe). They'd probably skim it to see if you threaten a lawsuit and after breathing a sigh of relief, stick it in your file.

This is no reflection on the quality of your letter, just the reality of today's medical establishment (again, based on my experience and IMHO).

You don't sound like you're planning legal action but what about threatening a formal complaint(s) to the appropriate agencies? I once did that regarding shoddy ER treatment my husband received at a local hospital. I sent my letter to the hospital's ER chief and he called me to discuss my complaint. It was odd to be taken so seriously and treated so respectfully by a physician who sounded like he was shaking in his boots for fear of my filing a complaint.

Sadly, I don't believe he would have addressed my issue had I not threatened action.

Good luck with the letter and most of all, with resolving your RLS issues. I always appreciate your support and never before read the horrific details of your experience.

[becat]

Susan, welcome to the world of Qulaity of Life statements.

Although yours was meant for the the shorter version, it's spot on.

Nope, I simple think you used the right amount of words it takes to explain the insanity of trying to get help from people that promise to be of help.

Jumpyowl use to remind us all of the oath Docs take and tell us to remind them..."cause no harm".

In this case many caused you harm, and that harm I am so sorry for. Pain is just another wound on top of RLS.

I hope and will send up prayers that you find someone close that you can help you with dignity and honesty.

They (bad docs) never understand how hard is it for some to even show up at the office, much less explain, without sleep, what they should have already been taught or could have learned.

I'm so glad to hear that you felt better after writing the letter, that is what it is all about. So use as many words as you wanna.

Lynne

[glfngrl]

Susan,

I personally would try to make an appointment with DR. FOX asap. Sounds like she is the type of doctor that you need. Of course, also write your letter, and tell her that you did so. Perhaps she could facilitate it being read by the right people.

Apparently most sleep clinic doctors have some sort of "basic need" to label RLS patients as having sleep apnea!! I have recently made two visits to the sleep clinic at Medical College of Ga.............the first time, I saw a wonderful young female doctor. She was very knowledgeable about RLS, gave me plenty of time and attention, and welcomed my input. She was willing for me to share the decisions as to how we should treat my worsening symptoms. Since I have had symptoms for over 45 years, and have read extensively everything I could get my hands on, as well as was very active on this discussion board when it first came into being, I told her upfront that I would not subject myself to the expense and trauma of a sleep test. She was in complete agreement that it would accomplish nothing in my case. Now comes appointment # 2, which I assumed would also be with her. Wrong!! This time I drew a young resident (quite common when attending clinics driven by medical schools). He was also somewhat knowledgeable about RLS, but the first thing he recommended was "sleep study to rule out sleep apnea". I firmly reiterated my stance on that, so he reluctantly agreed that I should slightly increase my Requip, and up my oxycodone dose by half. (I was on very low doses of each, but was having lots of trouble staying asleep past 3 AM, and experiencing fatigue and daytime sleepiness constantly.)
He went to write prescriptions for me and never returned to the exam room. About half hour later, in saunters an older doctor, who obviously was a professor, and probably in the hierarchy of the sleep center. In a very dictatorial manner, he insisted that I schedule a study, as "sleep apnea is often a silent, symptomless condition, other than daytime sleepiness". After my adamant objections, he reluctantly gave me the prescriptions. He did suggest that I try doubling the nighttime dosage of Reguip to see if that did not allow me to sleep longer, therefore helping with the daytime sleepiness. I have done so, and for the last 3 weeks, have had reasonably good success, as well as d/cing the opiate for the most part. However, I am going to post a new subject concerning my legs and biking, which I think has been as helpful as the meds.

I know this is long...sorry, but hope it will help others to be firm with their doctors about what they know is best for them. Needless to say, I do not plan to return to the clinic, as the second doctor more or less told me that they could not treat me if I was not willing to "co-operate"!! (Fair or not, I seemed to see $ signs in his eyes!)

Jane (glfngrl)

[Neco]

Why are these people giving you requip if you are taking Oxycodone?

If the requip is causing you problems like augmentation and worsening of symptoms, it would effectively be canceling out any benefit from the Oxycodone.

Forgive me if your case is different, as this is the case with everyone of course but generally when people take opiates its because the other medications did nothing to help or actually made it worse to the point where opiates were there only option, and that involves stopping all other medications except for the opiates..

Have you had any experience with taking only the Oxycodone? Its some pretty powerful stuff and should be able to manage your RLS alone I would think.. I don't mean to appear rude or crass, I am just curious. I apologize if you've been down that road and for whatever reason you seem to get more benefit from both medications, but from what I have observed over the years opiates taken alone are often the most effective treatment for RLS once they have been introduced.

I guess the point I am driving at is you may not need to go through a permanent Oxycodone increase, etc if you can determine that removing the requip (and it WILL get worse before it gets better, as your body readjusts to the absense of the requip) actually improves the RLS within a few weeks of stopping it..

Again if you've tried that I apologize, its just the most common situation we see here on the forums when opiates are involved, that other RLS meds are usually given the axe because they provide no additional benefit and still incur negatives to the patients comfort / side effects.

[Neco]

Also, Susan, I am willing to volunteer my services as a writer to try and cut down your letter if you like. I'm sure it can definitely be cut down without losing the impact that you are working so hard to convey.

[glfngrl]

Zach,

There are many of us who have had RLS for longer than you are old! LOL

As to the why concerning taking Oxycodone along with the Requip.........I have been able to keep doses of both medicines in the lowest range possible by combining them. I just recently increased the dosage of the Requip because I probably had never been on the correct amount. As a result, I no longer take Oxy unless I do something inadvertently to cause daytime symptoms. (For instance, eat something sweet, or something with Splenda in it. or do not get in any exercise for a day or two.) You are correct............each person has to manage his/her RLS in the way that works best for them. To me, there are several reasons for carefully doling out the opiates...........first and foremost, many docs object to continually writing prescrips for them; it can lead to scrutiny for them as well as the patient. Secondly, eventually the dose of opiates will have to also be increased, leading to secondary, unwanted side effects. Just for the record, my current regimen is .05 mg. of Requip at night. If I need to boost it, I will take 1/4th of a 5/325 Oxycodone along with it. Although my RLS is moderately severe and an everyday occurence, I also diligently try to follow the other "rules" that most smart RLSers abide by:
no caffeine, no sugar, daily exercise, stretches, hot baths before bedtime, etc. I am constantly in tune with what is going on with my body in relation as to how it affects my RLS. (Have you read the topic I wrote this afternoon entitled "Biking anyone?" ? ) I am sure as you get older, you will also learn more ways to cope, and hopefully we will soon have a medication that works better without all the pitfalls of any of the current
ones.

Another little reason for combining the two drugs...........the opiate works faster and starts to give relief before the Requip kicks in.

By the way, I have a grandson whose name is Zach, and even faintly resembles you!

Jane (glfngrl)

[Neco]

Did someone tell you that if you keep taking the opiates you will need to start increasing your dose after a period of time? Or maybe you just thought that's what would happen?

Because I feel that is incorrect and if someone actually told you that, they should be scolded.. I think we can all agree that here and there we do need to make minor adjustments to our doses as our symptoms fluctuate with the seasons of the year, and due to other causes; however once your body becomes accustomed to your typical dose, this largely has been stated as being a non-issue.. moving your dose up and down 5 or 10mg throughout the year for example is no big deal in my book. Many researchers as well as RLS specialist (and I'm pretty sure this includes Dr. B if I remember my reading correctly) have stated on numerous ocassions that once an RLS patient is given the correct amount of medication they can stay on that dose for long period of time, counting in years, without needing an increase.

I am a very special case, as everyone knows, being a full-blown addict, however now that my meds are being managed and rationed out to me by third party I have been on a consistent dose of 15mg methadone in the morning when I wake up, going into my third month now. I do have 10 extra pills with which I can take at my discretion for toothaches, or nights when my RLS is worse on ocassion.

There are many people here on Vicodin and Oxycodone who have been taking roughly the same consistent doses as well, and Mia who is also on methadone has been taking 5mg a night for an entire year without so much as one complaint.

You shouldn't fear the idea of taking more and more medication over time as the weeks tick on by because all the evidence says that outside of the tolerance people form with opiates (which becomes dependance on a minimum specific dose, and is a completely legitimate medical side effect) , or most any other medication, repeated escalation will not happen unless the RLS itself progresses to a more severe state.

Yes it is true I am a big champion of opiates, however I would like to think I also take pride in my understanding of how they work when used to trrat RLS, based on lots of reading and observations from myself and other members here.

I'm not trying to spite you, I just think you have the wrong impression. If anything I view only taking opiates on ocassion as an ill-advised band-aid to an ill-treated disease. I am not judging you and will tell you to keep on doing what you are doing because it works for you. But it's my educated opinion that for those who are truly worried about escalating doses or addiction, they should consider taking the opiate every day as opposed to every so often. Why would I say this? Well one of the key components leading to addiction to chemicals like these drugs is the fact they do make you "feel good". However someone who takes a consistent dose every day will notice over time that those good feelings and relief of anxiety / mellowing effects soon fade as your body becomes accustomed to that level of medication. Thus the danger phase, in my mind is passed over more quickly versus someone who intermitantly takes opiates.

This is exactly how my addiction started actually. I strived to be vigilant and not take my Vicodin unless I needed it, and liked the fact that I could keep getting to same good feelings because I was not taking it so often.. But after that point, I did start taking it more, and every day, and the dose started going up and the rest is history.

So I am just providing a little perspective and personal interjection into the matter of the "dangers" of taking opiates every day for RLS.. The fact of the matter is all of us on the forums who take some kind of opiate, are taking relatively the same dose all year round, with minor up and down fluctuations that are minuscule in comparison to "questional behavior" on part of doctor or law enforcement suspicion.

Finally, I do think it is sad so many doctors are reluctant to prescribe painkillers and chronically under-treat patients in mild to severe pain. The majority of the population are law abiding citizens and the minority cause our doctors to be scapegoated by the pathetic sensationalist main stream media whom frankly I have no faith in any longer, considering a certain networks ridiculous political assassination attempts against solely one party, from the start of our election season (but I should stop there).
They are the ones who are truly ruining it for us and our doctors by continually enthralling the public and as a result making the DEA nervous about looking complacent..

It's sad that some doctors essentially shift the blame on the patient for having a problem needing these drugs, make horrible accusations without any real evidence, and make all of US feel guilty or like drug addicts (myself excluded I suppose) because how dare we come to them with an illness that requires strong pain medication...


umm... /rant over I guess =\

[ViewsAskew]

Susan, I will look at it on Sunday and email it to you.

[SquirmingSusan]

Wow, thanks everyone Lynne, Meg, Betty, Zach, Ann, Jane (did I get everyone?) for the great ideas and input.

About shortening the letter or making it 2 letters - I'm thinking of separating this into a complaint letter with a separate time that the readers can refer to as needed. That way I could retain all the details, but get them out of the way of the main "punch" of the letter. And Meg, I have thought about sending a copy of the letter to whatever organization accredits sleep clinics, because this clinic is accredited. I'm sure that would help get them to pay more attention.

Lynne, thanks for the encouragement. I try to not focus much on my quality of life, or lack thereof. It gets depressing. What do they say about depression is anger turned inward? This is helping me focus some of it back outward.

Apparently most sleep clinic doctors have some sort of "basic need" to label RLS patients as having sleep apnea!! [quote/]

Jane, your story about the sleep doctors is just too funny. I'm just sure the young doctor had to call in the "authority" to give you a talking to. Don't even get me started on how much I hate having to be seen by residents. I know they have to learn somewhere, but sometimes I just want the expert the first time, instead of having to have 2 whole appointments because the resident can't figure out what to do with me.

What was bad about my visit with the NP was that she had my sleep study in her hands when she told me that I needed treatment for my apnea. And it clearly showed that I didn't have apnea. Around here most sleep clinics are run by pulmonologists, so they're looking for apnea first.

I suppose seeing Dr. Fox is an options, but she's way the heck on the far side of the metro area from me, and I have trouble driving because of, what else, daytime sleepiness. But maybe she works out of one of the closer clinics sometimes. Or I could make my dh drive me. At that point, though, it just seems easier to just fly out and see Dr. B. (OK, any excuse to go to California!)

Thanks again for all your support and encouragement with this!

[SquirmingSusan]

Also, Susan, I am willing to volunteer my services as a writer to try and cut down your letter if you like. I'm sure it can definitely be cut down without losing the impact that you are working so hard to convey.

That would be great, Zach. As I was saying in my last post, maybe it would be best to split it into 2 parts - the actual complaint letter and a timeline. I should probably get a copy of my records so I have actual dates.

Just be sure and keep all of the righteous indignation in there.