November 4,2003

halloweennightweb001largewebviewEven though it was cold, windy and snowing, we had 220 kids come to our door between 6:00 PM and 8:00 PM on Halloween. The seven foot skeleton, 6 foot air filled pumpkin, the witches and ghosts howling in the trees and the appropriate Halloween sounds emanating from the CD player in the garage created just the right ambiance. The red flood lights combined with the lights from the standing pumpkins and skeletons cast the perfect eerie glow. My grandson, dressed as a ghoul, walked menacingly through the little cemetery and between the trees adding an atmosphere of suspense. My husband and I were relegated to answering the door dressed as a witch and spooky old man. We had a wonderful time entertaining the trick or theaters that came to the door.

My appointment with No Name was on November 4th. I got a copy of my September 18th lab results; namely BUN, Calcium, Magnesium, Potassium, Sodium, and they appeared to be normal. No Name told me not to be concerned with the medication he prescribed for me. I asked him if it might be possible to find out why I am experiencing these weird headaches, severe bone pain, dizziness and disorientation. His answer was a shrug of his shoulders. Some time ago, the Gypsy (our “jack of all trades” in house specialist) told No Name that a solution to my medical problems was unlikely. She recommended that No Name should treat my symptoms and not bother with further testing. I guess he has taken her advice to heart.

After an appointment with No Name, I wonder why I bothered to make the effort to see him. People are probably wondering why I don’t get off my butt and find a new doctor. Oh if it only where that easy. The only place left to try and find a new doctor is in the city which is 50 miles away. At this point in my struggle I am much too tired and sick to commit myself to a 100 mile round trip every time I need to see a doctor. I do not have the energy to leaf through the city yellow pages in the hopes of finding a physician with listening skills. What to do next? When I let myself think about my medical problems for any length of time, I feel like I am in a deep dark tunnel with no exit. The thought of what the state of my health will be like in 6 months time or 12 months time is overwhelming. I have found it is best not to let my thoughts drift in that direction.

For the record, I think it is an outrage that our medical professionals care so little about the health and well being of so many patients. It is unforgivable that they are too lazy and self absorbed to put in the time and effort required to diagnosis anything more complex than the common cold.

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October 28,2003

“Only two things are infinite, the universe and human stupidity, and I’m not sure about the former.”

-Albert Einstein

Winter has arrived. We woke up to snow on Sunday morning and it has continued to snow on and off all week. I keep hoping it will disappear for Halloween.

We were blessed with wonderful weather for the Thanksgiving weekend which fell on October 11th to 13th. My parents and daughter, son-in-law and grandson were over for Thanksgiving dinner on Sunday. On Monday we put the Christmas lights up around the house.

The next weekend was just as nice and we had a lovely visit with friends we hadn’t seen in twenty years.

On October 21st I discovered yet again how cold, callous and uncaring our intellectually challenged doctors are.  I called the wretched Communist clinic to make another appointment with No Name. I was becoming concerned about the medication he had prescribed for me and I wanted some answers. I was told that the poor sod was on another one of his extended vacations. He would not be returning until November. I realized very quickly that I would be out of medication by November.  I knew that trusting my medical care to his comrades at the Communist clinic could well be a death sentence so I decided to see if the Gypsy would see me. Her receptionist had called me four times in January and February of 2003 to ask me if I would like to come in for a chat with the Gypsy. Like chats with the Gypsy send my heart a racing!  Those early 2003 phone calls from the Gypsy’s receptionist reflected the Gypsy’s need to reconsolidate her patients. When WeeWantsItAll’s clinic closed in December 2002 poor Gypsy’s practice in town was in danger of going down the tubes. Not good news for the “jack of all trades” specialist.  I called the Gypsy’s office at the Communist clinic on October 22nd and informed her receptionist of my concerns. On October 23rd the receptionist called me back and told me that the Gypsy would be able to see me at the end of November.  I thanked her very kindly and told her that by the end of November my obituary could well be in the local paper. The receptionist was not amused and told me I could always attend the Walk in centre at the Communist Clinic. I very sweetly told her that if I did that, my obituary in the paper would be a done deal.

On October 24th I called No Name’s clinic and booked an appointment for November 4th. Hopefully my test results will be waiting for me at that time. When I saw No Name on September 18th he ordered a series of blood tests. It would have been very rude of me to have expected an answer from him before he left on his vacation. After all, it must take much time and effort to prepare for a month long holiday. One certainly can’t expect one’s doctor to think about something as trivial as a patient’s test results.

One thing these last years have taught me is patience and I have spent the last few weeks patiently waiting for No Name’s return. I am back to waking up 3 to 4 times a night. I reassure myself that a lack of sleep hasn’t killed me yet. The weird headaches at the back of my head are worse. Again pain never killed anyone. My hearing has deteriorated. This does get embarrassing when I do not hear my phone or doorbell.

We took our grandson to “Boo at the Zoo” this weekend and stayed at a Canad Inn on Saturday night. The zoo on Saturday evening was great except for the fact that Boo did not put in an appearance. Grandson was quite disappointed. He had told me that this year  he was going to confront his fears and shake Boo’s hand.

Sunday morning when I was packing up to leave the hotel, I noticed to my horror that my digital camera was missing from the night table where I had left it.  We should never have gone back to this hotel because last year, someone stole my gold bracelet and glasses which were on the night table in the room.  So far the hotel is making sad sorry sounds but assuming no responsibility. I filed a police report on Sunday.

I do not do well with this kind of stress. I have had this weird headache since last week Thursday and the events on Sunday did not help. I find that as soon as stress hits, the dizziness and nausea become intolerable.

Friday is Halloween and I have been slowly decorating my yard since October 18th. The snow that fell in the last 3 days has made this job a bit more difficult. I will dress up like the old witch on Friday and thoroughly enjoy myself.

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October 10,2003

Today is my dad’s 84th birthday. We are blessed that he is so active and in such good health.  I am privilaged that my dad lives just down the street.  Whenever I need help or advice he is always there for me. Happy Birthday Dad.

To My Father

It matters not that Time has shed
His thawless snow upon your head,
For he maintains, with wondrous art,
Perpetual summer in your heart.

– William Hamilton Hayne

The weather changed today; the sky was cloudy this morning but the temperature was warm. By evening it was raining and with a definite winter like chill in the air. My family and I celebrated my dad’s birthday by joining my parents for dinner. Later on in the evening my mom, dad and I had a memorable time watching “My Big Fat Greek Wedding.”

To Dad with Love

 Some things will always be in style

Good solid things like honesty, and trust and caring about people,

It’s qualities like these, Dad, that you’ve taught me to value

Through your influence, your example, and your love.

 It has made me love you very much,

And has made me very proud to have you for my Dad.

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October 9,2003

Desiderata

Go placidly amid the noise and haste,
and remember what peace there may be in silence.
As far as possible without surrender
be on good terms with all persons.
Speak your truth quietly and clearly; 
and listen to others,
even the dull and the ignorant;
they too have their story. 

Avoid loud and aggressive persons,
they are vexations to the spirit.
If you compare yourself with others,
you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans. 

Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs;
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals;
and everywhere life is full of heroism. 

Be yourself.
Especially, do not feign affection.
Neither be cynical about love;
for in the face of all aridity and disenchantment
it is as perennial as the grass. 

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself. 

You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should. 

Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labors and aspirations,
in the noisy confusion of life keep peace with your soul. 

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be

~Max Ehrmann

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October 8, 2003

Image
I’m not 40-something. I’m $39.95, plus shipping and handling.  Artist Unknown

These first eight days of October have been very busy but very rewarding.  When I became ill I lost my motivation to keep up with my correspondence. Since I had been involved in genealogy research since 1983 I had keep in touch with family members all over the world. My husband’s transfers had us living in many different cities and one of the benefits of moving were the many friends we made along the way. This of course added to the list of people I corresponded with on a regular basis. I had been very negligent in keeping in touch with family and friends. At the end of September I decided that hell would probably freeze over before I would be given a diagnosis by the medical geniuses I had been seeing and there was no point in waiting any longer to write to family and friends. I am quite proud of myself; as of last week Friday I had sent out 49 snail mail letters to people in Canada, the US and overseas. To my surprise, as of today, I have had 15 people reply. I must say that it was very uplifting to hear from old friends after being out of touch for so long. 

Last Sunday evening my grandson asked me if I would help him build a webpage. He knows his nana very well. No sooner had he opened his mouth and we were on the computer finding web space. We worked on designing the website on Monday and Tuesday after school. I am happy to report that his site is up and running. Many thanks to friends who responded to my morning email requesting that they log onto grandson’s site. I had to pick him up after school today and he logged on as soon as he got to my house. The chuckles and expressions of genuine excitement coming from the den after checking his website counter and reading the messages in his Guest Book made this a very worthwhile effort. Grandson was impressed that the messages in his Guest Book came from all over the world. 

We have had summer like temperatures for the last two days. What a change from last week when Jack Frost paid us a visit several nights in a row.

It is after 1:00 AM and it is time this verbose woman tries to get some sleep. See you soon.

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September 30,2003

“I read recipes the same way I read science fiction. I get to the end and think, Well, that’s not going to happen.”

It is the end of September and miserably cold. The daytime temperatures have been hovering around 9 Celcius/48 Fahrenheit and the night time temperatures are down to -1 Celcius/30 Fahrenheit. The Farmers Almanac predicts a harsh winter for our part of the world.

This will be a short entry. Just too tired to complain.  Today is one of those days I prefer not to remember.

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September 18,2003

Serenity Prayer For The Undiagnosed
Author Unknown

“Lord, grant me the serenity to accept
The things I cannot change,
The courage to change
The things I can,
And the wisdom to hide
The bodies of Doctors I choked
When they said,
“You’re perfectly healthy,
It’s All In Your Head.”

The wind blowing out of the northwest today brought with it intermittent rain showers. The temperature this afternoon is only 47 degrees Fahrenheit and tonight a low of 37 degrees Fahrenheit is expected. We have had the most intense thunderstorms for the last two nights. The storms start around midnight and continue for several hours. On Tuesday night the lightening and thunder were continuous. I was up reading a book when I realized that the thunder hadn’t let up in over 20 minutes. We also had golf sized hail on Tuesday night. As I am sitting here writing I can hear geese heading south. They can certainly make their presence known. Fall is definitely my favourite time of year.

Last night was horrendous. I slept for a total of two hours however those two hours were split into 30 minute sleep intervals. I was awake for at least two hours between each 30 minute sleep. This sleep pattern is not conducive to waking up as a happy Hetta in the morning.  If this pattern continues much longer I will not be held responsible for my actions.

This afternoon I had another appointment with No Name. I only addressed three issues. Experience has taught me that three issues are about all a doctor’s attention span can handle at any given appointment.  After three issues their eyes tend to glaze over.

My first issue this afternoon was my sleep problem. I informed No Name that I had not slept through the night since June 2, 2000 and that the two types of sleeping pills I had tried where a disaster. My second issue was the ever worsening bone pain and proximal muscle weakness. My third issue/request was for a TSH and potassium test. No Name asked me to try a new pain medication which he claims will alleviate the bone pain and may help me sleep at night. Now that would truly be a miracle. He also ordered the following blood work; TSH, potassium, sodium, calcium, creatinine, parathyroid and CK.

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September 15,2003

It is only Monday today and I woke up dreading the rest of the week. On September 9th I broke down and had my sleeping pill (Starnoc) prescription renewed. They hadn’t worked in March and April but I decided to give them another try. What a joke! I took one on September 9, September 11 and September 12. Since I am intelligent enough to understand the prescription instructions, I took them exactly as prescribed. I slept for precisely one and a half hours on each of the nights I took this medication. Needless to say, I will not be taking Starnoc again.

My mother who is 82 years old has developed blood pressure problems over the last two years. She has been seeing a family doctor here in town. She has been put on several medications and none of these have proven to be completely successful. After starting a new medication several months ago, she developed a severe rash around her mouth and on her chin. At times there is also a noticeable swelling of her lips. After some research, I found that a rash and swollen lips could be a side effect of this medication. My mother went back to her family doctor with this information and he sent her to see the Gypsy. As you know the Gypsy is the town’s one and only so called specialist, (note I say that with tongue in cheek). My mother asked the Gypsy to refer her to a well known cardiologist. The Gypsy asked my mother why in the world she would want to see him; after all she, the Gypsy, had exactly the same training as the cardiologist. Duh! Bottom line is that my mother was not referred to the cardiologist and continues to suffer from fluctuating blood pressure. The Gypsy is going to try and book an Echo cardiogram for my mother but there is a twelve month waiting list. My mom will be seeing a dermatologist about the rash on her face and chin. This rash is really peculiar. When the rash appears it is usually accompanied by a slight fever.

My mother is a vibrant and otherwise healthy woman. She is involved in many volunteer activities and her social calendar is always full. I do not understand the reluctance of the Gypsy to refer my mother to a cardiologist. If the blood pressure problems are not solvable that is a different story but for crying out loud let the woman see a cardiologist! Are 82 year old women “throw away” women as well?

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September 7,2003

To: The Medical Community of the United States

With Permission from Cynthia Toussaint

Stop the bias which prevents the ethical and equal treatment of women with chronic pain diseases…now.

Women in this country have for years suffered from a destructive bias and prejudice by the medical establishment when it comes to the assessment and treatment of their chronic pain conditions.

All too often, their pain reports are discounted as “emotional”, psychogenic or “all in their head”, and therefore, not real. Women for their complaints of chronic pain are often prescribed sedatives to “calm their nerves” while their male counterparts are prescribed painkillers.

Multiple studies support the fact that while women are more likely to seek treatment for their chronic pain, they are also more likely to be inadequately treated by health-care providers. This is in large part due to the health-care provider’s discount of a woman’s verbal pain report and the medical profession’s over emphasis placed on biological pain contributors rather than emotional or psychosocial pain contributors.

Typically, a woman expresses her pain experience in emotional terms, often describing how her chronic pain negatively impacts her family and social life. She may even cry which leads the health care provider, due to old cultural and social perceptions, to assess that the pain is psychologically-based without any physiological basis. This is often the plight of women afflicted with chronic pain conditions such as fibromyalgia, reflex sympathetic dystrophy, pelvic pain and TMJ.

Last fall, a report in the Journal of Law, Medicine and Ethics titled “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain” perfectly articulated and substantiated this endemic shortfall of pain treatment for women. It concluded, among other things, that “women’s pain reports are taken less seriously than men’s, and women receive less aggressive treatment than men for their pain.” Furthermore, an article in the New York Times (6/23/02) written by Nancy Wartik cited this report and exposed this ongoing medical scandal.

I, myself, have been an unfortunate victim of medical gender bias. My story began two decades ago when I was a 21-year-old ballerina with a very bright future. Then one day I suffered a minor ballet injury that quickly turned my storybook life into a living hell. For the first thirteen years of my illness (reflex sympathetic dystrophy), my doctors, predominately male, told me my physical problems were “all in my head” while the disease progressed throughout my entire body, eventually leaving me bedridden with chronic, intractable pain.

Despite my multiple symptoms (burning, stabbing, spreading pain, limb contractures, muscle tremors and atrophy, skin discoloration, etc.), my doctors condescendingly explained away my problems as psychological. I was told that I was suffering from stage-fright, enjoying the benefits of secondary gain, had “tendonitis from Mars”– one doctor told me I was contracting my limb with my mind just the way one levitates oneself! My medical experience is an excellent example of what women afflicted with chronic pain are often subjected to in the male-dominated medical community.

This type of treatment smacks of gender discrimination and must stop now. Women should no longer accept or tolerate second-rate treatment and condescending mind-sets which put them at risk of life-long disability or worse. The emotional and psychological traumas these practices exact are immeasurable and ultimately destructive to the spirit and soul of the sufferer.

“First, do no harm” is an oath a doctor takes as a pledge to patient care; however, harm, more often than not, is the result when it comes to treatment for women with their chronic pain diseases.

I have taken the liberty of drawing up a Women In Pain Bill of Rights to articulate what I see as essential demands for a woman suffering from chronic pain and the expectations she should have of her health care provider:

Women In Pain Bill of Rights

A woman in pain has the right to:

1) Have her self-report of pain taken seriously, without prejudice, bias or dismissal.

2) Express her pain experience in its fullest context in a way that is true to her nature.

3) Have her pain experience equally assessed to that of a man’s.

4) Not have her pain experience dismissed or discounted condescendingly as “all in her head”, “hysterical”, “hormonal”, “psychogenic”, “too emotional”, etc.

5) Have a free and open DIALOGUE with her physician about her pain experience and its impact on all aspects of her life.

6) Receive treatment that is consistent with current pain management standards.

7) Be treated by a physician enlightened to the fact that women and men experience pain differently.

8) Challenge her physician about diagnosis and prescribed treatments without fear of being labeled “hostile” or “difficult.”

9) Be treated in a clinical setting which understands and appreciates pain as a mind/body experience and accepts that emotional overlay (depression, anxiety, etc.), secondary to the organic cause, can adversely affect pain level.

10) Seek relief by whatever means is most effective, be it alternative, complimentary, traditional Western or by other treatment regiment.

Thousands upon thousands of women suffer needlessly on a daily basis due to the old attitudes and gender bias which permeate the medical establishment. These practices must end now before more harm comes to those who need help most.

Please sign this petition to support the spotlighting of this crucial healthcare issue and forward it to as many people as you can. All signatures and comments will be presented to media sources and politicians to help give this agenda the urgent attention it desperately needs.

Thank you for your time and much-needed signature of support,

Cynthia Toussaint
Vice President & Spokesperson, For Grace
A nonprofit organization dedicated to raising awareness of the chronic pain disease, Reflex Sympathetic Dystrophy

For Grace
PO Box 1724
Studio City, CA 91614
818.760.7635
rsdaware@forgrace.org

Home

Sincerely,

The Undersigned

For Grace – http://www.forgrace.org

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September 6, 2003

“If you love something, set it free. If it comes back to you, it is yours… If it doesn’t, it was never meant to be. But, if it just sits in your living room, messes up your stuff, eats your food, takes your money, and doesn’t appear to realize that you’ve set it free….. You either married it or gave birth to it.”

Summer passed by too quickly this year. We are experiencing a lovely fall day with temperatures hovering around 80 degrees. I spent some time Wednesday afternoon taking a video of my grandson and his friend skateboarding. After all was said and done I have 40 minutes of what could be the first movie of two famous skateboarders. Thursday evening it was my turn to take Grandson to hockey registration. Hockey camp begins on September 19th and the hockey season begins on October 14th.

I am still reading old lab reports and this morning came across the following Echocardiogram print out dated December 5, 2002.

Report: This study was performed to evaluate pulmonary hypertension. Image quantity was fair.
Dimensions:
Interventricular septal thickness 1.2 cm.
Posterior left ventricular wall thickness 1.3 cm.
Left Ventricular end diastolic dimensions 5.3 cm.
Left Ventricular end systolic dimension 2.6 cm.
Left Ventricular ejection fraction 70%
Aortic root 2.9 cm.
Left Atrium 4.5 cm.

1. The left ventricular cavity size was normal. Wall thickness was mildly increased. Left ventricular systolic function was excellent. Diastolic function was essentially normal.
2. Normal right ventricular size and function.
3. Left atrial enlargement.
4. No significant valvular pathology was identified. An accurate estimate of pulmonary artery systolic pressure could not be made due to the presence of only trivial tricuspid regurgitation.

Impression: Preserved left ventricular systolic function. Mildly increased wall thickness.

This afternoon I spent some time going over the letter from the doctor at the sleep clinic I attended in February 2002. The observations and findings noted in the letter are as follows:

CPAP Therapy Start:

1. The amount of sleep and sleep continuity were adequate to assess sleep pathology. Technical quality of the study was adequate for interpretation.

2. Subject was started on CPAP at 4 cm and pressure increased mostly for arousals to 6 cm with reasonable control of her breathing including during REM, although she did not have any significant intervals of supine REM.

3. We did not see REM rebound.

4. She continued to have a large number of micro arousals at 35/hr not associated with respiratory events and not affected by changes in CPAP pressure.

5. She had increased transitions into stage 1 and wake. Very little slow wave sleep was seen. Sleep macrostructure was otherwise normal.

6. She had one interval of periodic limb movements with arousal ending with an awakening associated with a “jolt”.

7. Subjectively she tolerated CPAP reasonably well but did not note a dramatic change in her sleep quality.

FINDINGS:

1. Good control of mild, REM predominant sleep disordered breathing on a low-pressure CPAP.

2. Probable restless limb syndrome. Although she had only a brief interval of periodic limb movement during sleep it was clearly associated with a “jolt” awake strongly suggesting RLS/PLMD because of those symptoms.

3. Severe alpha intrusion.

Suggestions: I prescribed CPAP 7 cm. with a small Acclaim mask, and a heated humidifier. I remain pessimistic CPAP will alter her situation much.

Diagnostic Sleep Study:

1. Sleep onset was normal but difficult to score secondary to marked alpha intrusion. Overall sleep macrostructure showed increased fragmentation with increased transitions into Stage 1 and an interval of sleep maintenance insomnia. She had jolted awake without clear cause and was then quite restless. She settled with some reassurance and with one dose of Sinemet 100/25, although it is unclear if the drug did anything. No clear periodic limb movement was seen during sleep. Sleep microstructure showed marked alpha intrusion and increased arousals as 31/hr. Many of the arousals were associated with hypopneas although the events were relatively subtle. She snored occasionally and quietly and did not sound particularly obstructed. However, she had measurable hypopneas at 20/hr overall and 40/hr during REM. Events were not associated with significant desaturation and the overall mean saturation was 97% with her nadir at 89%.

FINDINGS:

1. Severe alpha intrusion

2. Mild, REM predominant hypopneas with associated sleep fragmentation.

3. “Jolt” awakenings not associated with evident cause. She was restless when awake and complaining of her legs but periodic limb movement was not seen during sleep. Overall I cannot draw a conclusion regarding restless leg syndrome.

PLAN:

1. She has sufficient sleep disordered breathing that a trial of therapy is warranted. With luck it will improve her fatigue and pain control, although I am not optimistic.

PRESENTING PROBLEMS:

Pain in her hips, ankles and Achilles tendons.
Restlessness interfering with sleep maintenance, with restless crawling sensations in her legs and often with generalized restlessness.

Chronic fatigue; nonrestorative sleep with minimal daytime drowsiness.
She has had multiple problems since developing Graves’s disease treated with I-131 in 1998.

Concern regarding possible pulmonary hypertension and right sided heart failure caused by sleep apnea.

OPINION:

1. Restless limb syndrome. It remains unclear if this is related to her thyroid abnormalities or any other metabolic derangement. The lack of response to Sinemet and Pramipexole might have been from too low a dose. The RLS timing is slightly unusual in peaking around 0130 – 0230 rather than in the evening however the other features are typical.

2. The episodes where she “jolts awake” do not appear to be respiratory, but are accompanied by generalized restlessness and inability to lie still, although without crawling sensations in her legs. She relieves the restlessness by pacing. This is again suggestive of restless limb syndrome, although it is much less typical than the crawling sensations she describes on other nights. They do not suggest events from any respiratory disorder or other clear sleep apnea disorder. They may reflect an underlying anxiety disorder although she clearly states that her mind is calm and it is only her body that is restless.

3. She has mild REM predominant sleep disordered breathing. She does not have clinical features suggesting right-sided heart failure or pulmonary hypertension at this time. She has minimal daytime drowsiness despite her chronic fatigue. I am not optimistic that therapy of her REM predominant hypopneas will alter her symptoms much, but she has sufficient events to merit a trial of therapy. OSAS could contribute to peripheral edema.

4. Severe alpha wave intrusion during sleep. This is a non-specific marker but it is commonly associated with chronic pain and anxiety syndromes, nonrestorative sleep and fatigue. It is usually resistant to therapy.

5. Status post Graves’ disease treated with radioactive iodine, current thyroid status unclear. She has skin changes over her hands very suggestive of myxedema. She does not have clinical evidence of residual cardiomyopathy.

6. Recent episode of severe hypokalemia. This was possibly secondary to diuretics; however, she told me she was on amiloride which should induce hyperkalemia if anything, not hypokalemia.  If she was indeed profoundly hypokalemic and it cannot be explained clearly on potassium wasting diuretic therapy then she needs to be carefully assessed to ensure she doesn’t have hyperaldosteronism.  As well if she was hypokaemic she is at markedly increased risk of recurrent hypokalemia on her current furosemide without potassium supplement.

7. With her bone pain and history of hyperthyroidism she is at increased risk of osteoporosis.

8. I do not have an explanation of her bilateral Achilles tendon nodules.

SUGGESTIONS:

1. I explained the mechanism of normal breathing, snoring and sleep apnea syndrome in detail. I discussed appropriate therapies and recommended a trial of CPAP. She is being titrated tonight. I will comment further after that study, but I am not optimistic CPAP will help much.

2. For her restless limb symptoms I suggest blood work to rule out metabolic causes including: hemoglobin; ferritin; Ca; Mg; Cr; TSH; folate and a WBC. Considering her recent electrolyte derangement I suggest following her Na, K and Cr closely while she is on any diuretic. Assessment for hyperaldosteronism should be considered.

3. It may be prudent to repeat bone density screening.

4. An electrocardiogram should be done if there was clinical suspicion of pulmonary hypertension.

5. For her restless leg syndrome and nocturnal jolts I suggest Pramipexole 0.5 qhs escalating immediately to 1.0 mg than 1.5 mg if the lower doses are ineffective. Response should be immediate. If this fails I would next try gabapentin escalating up to 400 mg qhs. I would next consider a narcotic such as codiene 30 – 90 mg at bedtime or during the night.

6. She might benefit from heel lifts for her Achilles tendons and local therapy from physio, and possibly from an NSAID or a COX2 inhibitor.

I read this report and shake my head. Squirt, my family doctor at the time, refused to follow any of these recommendations. When I asked him when he was going to request the recommended tests for me, Squirt asked me what I was talking about. I literally shoved his chair over, grabbed my chart off his desk and proceeded to show him the letter in my file from the sleep clinic doctor. My impression was that Squirt was ticked off that I had not received a firm diagnosis of sleep apnea. After all that is why he had sent me to the sleep clinic. It was also at this time that Squirt decided to close down his medical practice and I am sure that influenced his decision not to proceed with the recommended tests from the sleep clinic.

I will have to present this letter to the next doctor I see. Maybe, just maybe I will find a physician who will actually take the time to read it and follow it’s recommendations.

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