What I’ve got to, got to know is….

Posted on February 3, 2010 by queenofoptimism

Why does Medrol take it away?

(sung to the tune of Lenny Kravitz, “Are you gonna go my way?”)

Medrol AKA Methylprednisolone can be magic for me.

For those of you not in the sicky world – it’s basically steroids.

Yesterday, my trapezius, sternocleidomastoid, and arm muscles were so spastic and weak, I couldn’t

You teeny tiny miracle you.

carry my purse on my right  shoulder.  I was unable to lift my right arm enough to wash my hair independently. Today, after three full dose days, I feel more energetic and while my range of motion is still limited, it’s like I am a different person than I was Monday morning.  I’m also less fatigued overall than I have been in weeks.

When a pharmaceutical works so well and so quickly for me, I can’t help but become skeptical.  Am I really doing more harm than good? Ask An MD has a great post related to this topic right now.

For me, it seems as though Medrol is a last resort – when all else fails with me, give her some Medrol or Prednisone.  Medrol comes in a convenient purse or pocket pack.  It has a scheduled taper printed directly on the tablet container.

So, what is up with Medrol and if it potentially works so well, why I am not constantly on it?

There are many good reasons it is a last result.  There are many possible side effects that range from harmful to annoying and uncomfortable.  One unfavorable side effect is puffy face and endless appetite.  One happy side effect, my psoriasis clears up a bit.

From Pfizer http://www.pfizer.com/files/products/uspi_medrol.pdf

DESCRIPTION

MEDROL Tablets contain methylprednisolone which is a glucocorticoid. Glucocorticoids are adrenocortical steroids.

ACTIONS

Naturally occurring glucocorticoids (hydrocortisone and cortisone) are primarily used for their potent anti-inflammatory effects in disorders of many organ systems.  Glucocorticoids cause profound and varied metabolic effects. In addition, they modify the body’s immune responses to diverse stimuli.

INDICATIONS AND USAGE

MEDROL Tablets are indicated in the following conditions: (see above referenced document for details)

1. Endocrine Disorders

2. Rheumatic Disorders

3. Collagen Diseases

4. Dermatologic Diseases

5. Allergic States

6. Ophthalmic

7. Respiratory Diseases

8. Hematologic Disorders

9. Neoplastic Diseases

10. Edematous States

11. Gastrointestinal Diseases

12. Nervous System

13. Miscellaneous

WARNINGS

Too many to list (per me, Queen of Optimism.  check out the document for more info)

Mine is actually more full. Sad, I know.

Medicine Cabinet

With where I’m at with my leg and neck/shoulder/arm problems, I’ve suddenly developed a fuller medicine cabinet.  Today, I picked up an e-prescription for Ultram.  I know nothing about this drug.  I already have Darvocet, am supposed to take Valium, and take Klonopin as needed for anxiety.  I’m growing uncomfortable with the pill approach. Especially when we’re talking opioids and tranquilizers.

However, there’s no denying I have been more awake and more productive thanks to Medrol. And, the pain I had been experiencing pre-pain pills was debilitating.  If pills are a long-term solution, I want to know why.  Even though I worry about jinxing myself, let’s hope super Neuro #4 can give me the answers.

But what if the Medrol masks my symptoms for when I see my new doc on the 17th?!? Eek!

My dear fellow patients:  Do you take Medrol?  How do you feel about your other prescriptions?

Docs and other Medical professionals - what are your thoughts?

I changed some settings on my blog so I believe you can now post more anonymously!  I’d love to hear from you.

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If you are so inclined

Posted on February 3, 2010 by queenofoptimism

Doctor D was so kind in nominating me for a MedGadget Medblog Award for Best Patient’s Blog.  I made it as a finalist.  The polls are open until February 14, but it’s no surprise that I don’t have many votes.  If you are so inclined, you may vote by clicking here and/or check how I am doing in the polls.

I appreciate the campaigning that has been done on behalf of The Queen of Optimism by my friends including  DearThyroid, Sick Momma, and the Herman Letters.

Sure, this little blog is not of the award winning caliber.  But there is a bigger reason why I can not win this contest.

Anonymity.

Very few people I know are aware that I keep a patient blog. In fact, prior to becoming a finalist, I think only five people from my off-line life knew I did this and only two had ever read it.  One of the two people is my spouse.

Since becoming a finalist, I have joked with friends and co-workers about the fact I am a blog contest finalist.  But I haven’t shared the details.

Plus, if you know me, you know I don’t talk about my personal life much.  I’m private and more comfortable talking about you.  And frivolous subjects such as hair, makeup, and the occasional celebrity gossip.  If I’m feeling feisty, I will talk about my passion for helping the less fortunate as my career, what I know about “real” politics, and things I’ve heard on NPR.  But I won’t tell you I’m moderately deaf and wear hearing aids, unless I’m having trouble hearing you.

If I knew people who know me were reading this, I’d censor myself and my feelings.  I’d worry about my spelling and grammar.  I write and edit for my work. A ton. My blog is different.  It’s for me.  It’s for you that happens to stumble upon it.  It’s for the little community that builds around me as I share myself and read what others have shared.

I have no real disease/disorder related community to connect with.  While I LOVE Dear Thyroid, I find myself as a bit of an outsider because I’m told by my docs that my thyroid problem and goiter are not much of an issue.

So what I’m asking for is that you vote.  Even if it’s not for me, check out the other patient and medical blogs.  You could find a new person to add to your community and you just might make someone’s day.

Thanks!

Best wishes always,

-Q

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Dear Dr. Neurologist

Posted on February 2, 2010 by queenofoptimism

January 22, 2010

Dear Dr. Neurologist,

I am submitting the MRI pictures for my brain, c-spine, t-spine, and l-spine, all taken in March 2009.  I have also included reports.

At this time, I have been experiencing an increase in my symptoms.  My impaired ability to dorsiflex my left foot typically fluctuates from mild to severe.  Lately, it is more often severe.  I am also presenting with other symptoms that have my Rheumatologist and Family Physician convinced the nature of the problems is neurological.  They are both also convinced that you are the doctor to figure out what has been baffling my other doctors.

I have a great career and am a happy mother and wife who wants a better quality of life.

Thank you for reviewing and I look forward to meeting with you.

Best regards,

Patient Q

********************************************************************

Could it be that this letter convinced Neurologist #4 to see me?  In less than three weeks, no less?  Did he find something in my MRI pictures that no one else caught?  Did I get drawn from the pile as a case for a Resident? (grrrrrowwwwll)

I discovered today that Dr. PCP never had a chance to speak with Dr. Neurologist. She never sent him any reports.  All he had to go by in selecting me was the above letter, two CDs of images, two MRI reports, and an EMG report.  His assistant told me it would not be enough to get me an appointment.  But I did.

Dr. PCP’s Medical Assistant feels divine intervention is at play.  I don’t think I can believe in that kind of thing no matter how strongly I want to.

I found myself at Dr. PCP’s office this morning because getting ready for work and driving with my arm in its current condition is not only painful but also challenging.  And, I feel, a safety risk.

My Sternocleidomastoid is still in spasm and now my trapezius muscle is as well.

“Let’s go back to basics” Dr. PCP said.  “It could be as simple as a radiculopathy”

So, off I went to the hospital with my x-ray prescription.  Several radiation exposures later, I was told I could leave.

Not so simple…simply puzzling.

No signs of radiculopathy or any lumbrosacral abnormalities.  I would have guessed I would have some visible issue with my left hip.  Nope.  I really wanted it to be simple.  I want to be just another person with sciatica or a pinched nerve.  Dammit!

It’s back to methyprednisolinone and valium for me.  Who knew? Valium is an effective muscle spasm reducer. I always thought it was just for anxiety so doubted its ability to help me until increasing my dosage.  Apparently, it only makes one loopy if they don’t actually need it.

For now, I seek relief.  I want to feel productive at work and feel productive for my appointment with Neuro #4.  Dr. PCP feels it’s not a good idea for her to join me for the first appointment but plans to call the doc to get him up to speed before I get there.  I wish she’d reconsider.

Please, please, please let this work out.

Let me be on the road to treatment that can help me get closer to the me I hope for.

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A Startling New Symptom Emerged

Posted on February 1, 2010 by queenofoptimism

I don’t know if startling is the most appropriate word, but the line is straight out of a medical show.

It’s my arm.

I stopped the Neurontin trial on Tuesday because of the worsening neck

My arm is definitely lifeless-like, similar to the doll.

symptoms and the possible correlation.  Beginning on Tuesday, I am getting dizzy every day around 2:45pm. I thought that stopping the Neurontin might help.  I think I was wrong.

I feel like a rag doll that two children are fighting over – one pulling my left leg, the other pulling my right arm.  Ouch!

My right arm is weak, painful, and limited – almost they way my left leg is and has been for some time.  With my arm, my range of motion is limited.  It feels slightly better when I rest it…lie it flat on my bed as I lie down.  My grasp is limited.  My shoulder hurts.  I do not recall having these symptoms before.

Just this evening I discovered I get the most relief from a double dose of Valium.  Ibuprofen does not appear to help and the Darvocet helps me sleep.  I doubt Valium is a long term answer, so I will look to Dr. PCP and my upcoming appointment with Neurologist #4.  As usual, my biggest concerns are how I will function to work and, in general, live.

In my mind, I keep going back to an anonymous post over at Ask an MD.  The Anonymous poster said their doc said, “”[your symptoms] will either go away, stay the same, or get worse. And sometimes it needs to get worse for us to figure it out, but you won’t die before then.”  Knowing my upcoming appointment with Neurologist #4, I hope this worsening of symptoms sticks around long enough for him to evaluate and figure it out.

Did I tell you much about Neurologist #4?

He’s internationally recognized for his work with neuroimmunologic diseases.  He’s very selective with his patients and somehow I’m getting in on Feb. 17.  I’ve asked Dr. PCP to accompany on the appointment and I am hoping, hoping, hoping that she will.

Though I’m not unfamiliar with the neurological exam, I found a great resource from the University Of Utah.  Full of info and videos.

I’m right-handed so this whole blogging thing with a bum right arm isn’t working too well.

Until next time….  I always enjoy your comments and wish you well.

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My Pitches to TV Land

Posted on January 29, 2010 by queenofoptimism

Barely a day can go by without someone mentioning the television shows House MD or Mystery Diagnosis to me.

Not a real doctor. Not even American.

“You need to go on Mystery Diagnosis!”

Well, not really.   You see, Mystery Diagnosis features people who have already been diagnosed.  The show tells the story of their mysterious symptoms, the persons that helped make the diagnosis are interviewed, a climax of the story is reached, a final diagnosis is revealed, and then cut to how great the person is doing now.

“You need Dr. House!”

Well, not really.  He’s fictional.  And, he’s indeed a wonderful diagnostician; however, he only helps people who are on their death bed.  I’m hoping for a little help before I reach that point.

So, I’ve been thinking.  Perhaps the world needs more television programs about the undiagnosed, the medical mysteries and puzzles.  Here are some of my ideas I think I should pitch.

The Patient

A Specialist reviews the work ups of a dozen patients and narrows down the choices to six lucky patients.  The Specialist spends 5 minutes with each of the lucky finalists.  In a special hospital gown giving ceremony, The Patient is chosen.  If

Who will be the next Patient?

things go well, the Specialist and The Patient will have a steady doctor-patient relationship.

Note:  I felt a bit like I was part of The Patient as I waited to hear whether Neurologist #4 will “pick” me as his patient.  Got a call today at 4:40pm – I’ve been selected.  The medical center has spoken.

So You Think You Can sleep?

Fatigued patients from all walks of life are brought to The Biggest Sleeper ranch. Each week, a patient who sleeps less than 8 hours per day is sent home.  The person who sleeps the most hours wins an all expense paid trip to the Mayo Clinic (including all medical expenses).

TextbookBusters

Fun, medical students Will and Gordy search America for persons with diseases that

The TextbookBusters!

present themselves in ways that differ from standard textbook presentations.  The persons with diseases undergo excruciating tests to prove that they are indeed ill and not suffering from somatization disorder.  Sometimes life-like mannequins or fake body parts are used.

Diagnosis Island

Undiagnosed chronically ill persons are treated to world class medical care in paradise.  Ahhhhh…

Pimp My Pill Sorter

‘nuff said

The Next Discovery Health Channel Star

The freakiest and most unusual living medical mysteries compete for the title of The Next Discovery Health Channel Star where they and their illness can be exploited for all of the world to see.

What are your television program ideas?

Do share them – need not be associated with the undiagnosed.

They’ve got to be better than mine!

Thanks for reading, sharing, and caring.  I always love to hear from you.

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Hold the Mayo

Posted on January 27, 2010 by queenofoptimism

This has got to be my worst pun post title ever.  But so fitting…please bear with me here.

I’ve long thought that if I wanted real medical answers, I’d go to Mayo.  The Mayo Clinic.  Why?  Several friends have recommended I go and from what I’ve heard, the costs can be reasonable, “they work with you”, and the doctors at Mayo are the only doctors in the world who can get anywhere close to figuring out what is wrong with you (me).

So, Mayo has been sort of a Plan B for me.  Today, I left work early because I felt terrible.  This is not something I do often nor is it something I want to do ever.  Frankly, my employer is getting fed up with the mixed messages I send:

“As soon as I have this appointment, things should be a lot better.”

My symptoms are only getting worse.  Saying things like “No one knows what’s wrong with me” only takes you so far in the workplace.  If no one knows what’s wrong with me then no one knows if I’ll get better.  If I don’t get better, I probably can’t keep doing my job at the current pace. 

Please don’t let this happen to me. Please don’t let this happen to me. Please. Please.  Please.

With this in mind, I felt today was the day to whip out Plan B.  If I can go to Mayo for a few days, I will come back with a diagnosis and treatment, right!?! I’ll be all set.  Moving forward.   No more waiting weeks for this or that appointment and weeks for the next and more weeks for the test results, the outpatient surgery – you get the picture.

So, I called Mayo.  Should I request an appointment with Neurology? Endocrinology? Rheumatology?

I cut to the chase.

“I am from out of state and my insurance does not cover visits to Mayo Clinic.  I would like to come to your facility.  How do I work it out?”

“You are considered uninsured.  Prior to scheduling an appointment, you must put down a $3,000-$4,000 advance deposit”

“I’m not sure what type of specialists I would see.”

“We work with you to figure out what specialists you need and after we schedule your appointments, you make advance payments for those appointments and diagnostic procedures that will be needed.”

So that’s how they “work with you”.

“Do you accept payment plans?”

“No ma’am”

“Okay.  Great. Thank you.”

Mayo is officially off the table.

I will wait to see if I am selected  as a patient by super special Neurologist #4.   I will wait the 4 weeks for my ENT to examine me for a salivary gland biopsy.  After the ENT examination, I will wait for my outpatient salivary gland biopsy surgery to be scheduled.  Then, I will wait the weeks for the results of the biopsy to confirm or rule out Sjögren’s syndrome.

Today I learned there is no Plan B for me.

However….

Today I also learned that I am a finalist for the 2009 MedGadget Medical Weblog Awards.  Squeal! Seriously, I am a finalist.  I’m so honored and giddy.  Voting begins soon at MedGadget.com  I’ll get you the scoop as soon as I can.  If you are so inclined to vote for me.

Thanks for reading and sharing your comments and questions.  I love hearing from you.

(P.S. Thanks for the nomination Doctor D!)

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Take a Moment to Answer the Poll!

Posted on January 27, 2010 by queenofoptimism

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Another Win for the Puzzling Symptoms

Posted on January 23, 2010 by queenofoptimism

I’m accustomed to not feeling my best.  I suppose that’s why I can’t tell when I have a respiratory infection.  And, I suppose it’s why I didn’t think my neck swelling was a big deal.

I’ve noticed for months that there is some swelling on the right side of my neck.  It became drastically more prominent this week.  So much so that a co-worker commented about it and the marked difference was easily detectable by my husband.

One of few muscles I remember from Anatomy and Physiology class. Sternum, Clavicle, Mastoid.

There can’t be something else wrong with me.  It’s not possible.

To satisfy my husband, I made an appointment with Dr. PCP.

“Your sternocleidomastoid is spasming! How did that happen?”

“I don’t know.”

“Did you get a new pillow?”

“No.”

“It’s been going on for five days?”

“Yeah, I didn’t think much of it.”

“It’s unusual for this muscle to spasm.  It’s usually only seen with torticollis. And your head is tilted to the side, just like torticollis.   Look it up when you get home.  This might have something to do with your salivary gland, your leg, or a neurological problem.  The only thing that helps is Valium.”

Slow down. I now have narcotic pain killers for my leg and valium for my neck.  I’m going to end up on Intervention before I ever make it to Mystery Diagnosis!  But seriously, I can’t let this go on like this.

Neurologist #4?

Today, I dropped off my records and MRI CDs to Neurologist #4.  He reviews the information and decides whether or not he will see a patient.  It could be months.

To be continued…

Thank you for reading.  I’d love to hear form you!

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Undiagnosed Illnesses are “In”

Posted on January 18, 2010 by queenofoptimism

The Today Show has a new feature, Today’s Medical Mysteries.

Kelly’s been undiagnosed for 8 years.

The segment features the National Institutes of Health Undiagnosed Diseases Program. The program serves 50 to 100 patient participants annually.  About a year ago, a friend suggested I contact this program.  I didn’t.  I feel as though I would not be considered.  Unlike Kelly, I have not been hospitalized for days, months because of my condition(s).  Instead, I have surgeries, tests, infections, and I wonder what’s next.  My leg problem first surfaced over 20 years ago.  Twenty years ago, I had already had ten surgeries on my ears.  Whether there is a connection to any of my symptoms, I do not know.  If my situation is important enough to enter a brilliant NIH program, I am doubtful.

I believe House, MD has brought an awareness and interest in undiagnosed illnesses.  As a patient, I find House fascinating but I doubt I will ever discover a link to my issues.  I have only seen a couple of episodes, but the problems seem a bit far out.  For example, I was intrigued by an episode that started with a businesswoman who suddenly felt a paralysis and pain in her right leg.  I DVRed the episode in hopes of a clue for me.  Not so much.  She was bulimic and had been abusing Ipecac syrup that lead to life threatening myopathy and respiratory failure.  I have never taken Ipecac syrup.

I’m reading Every Patient Tells a Story by Lisa Sanders.  I’m enjoying it and I am learning about how doctors approach my fellow medical puzzles.  What’s interesting is that a theme is a secret the patient does not reveal that is critical to their diagnosis.  I saw this with the House Ipecac episode.  I suppose I need to think of what I might be leaving out.

Questions and comments are always welcomed.

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Things have changed

Posted on January 17, 2010 by queenofoptimism

I was so proud that no matter what was going on with my body, I pressed on.  And on.

No naps under any circumstances. No missed hours or days of work no

One of the few awards I have won was The Energizer Bunny Award. (not affiliated with Energizer)

matter how limited I was in my walking or how generally sick I was.  This is as recent as five to six months ago.

My current reality

I wake up late every day.  I find it increasingly difficult to concentrate and focus on important tasks.  I’m forgetful.  Word retrieval is becoming an issue.  I work all week and try to appear as normal as I can.  All weekend, I recover.  Friday through Sunday, I sleep for 8 hours at night and 5 hours during the day.  I have a family to take care of!  I lack energy and am in pain to the degree that I can’t press on to have fun with my family.  I hope and hope that when Monday rolls around that even if I’m late, I make it.  I make it to work and do the best I can, pretending I’m at my best.  Never saying a word about my reality.

Today, I am scared.

Through the course of today, my ability to walk has decreased dramatically.  I’ve brought back the granny cane.  I was not this fatigued six months ago. The pain feels unfamiliar and severe.  I’m scared that no matter how much weekend recovery I try, I still will be limping by Monday.  I’m a worried woman with a worried mind.  If things have changed, does this mean I’m getting worse?  Permanently?  I stop myself from going there – thinking of the full impact if this is the case.  I must press on.

Current Medical Opinions

The expert Rheumatologist Dr. PCP consulted feels there may be something to my January 2009 diagnosis of Sjögren’s syndrome despite the fact I no longer test positive for the SSA Ro antibody and do not show the classic mouth/eye dryness signs. I will have a salivary gland biopsy that I’m told will give me a definitive diagnosis.  If it is negative, the Rheumatologist suggests I get a new Neurologist.

If you’ve been following my story, you may know this would be Neurologist #4 for me.  You may also know, I wish to never see another Neurologist again because so far, they’ve only given me self doubt by dismissing me and insulting me.

While things have changed in terms of my ability to manage my symptoms and truly press on, what has not changed is that I continue to be a medical puzzle. I’m no closer to a treatment and/or a diagnosis.  I fear my hopes for living a better life are for naught.

Thank you for reading.  Best wishes to you.  And, yes, I am always interested in your comments.

-Q

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