The 13 vials of blood came back negative for every antibody and every thing else tested except for my ANA, which was low.

It still amazes me that I definitely have a goiter on my thyroid and yet not a single antibody to prove it’s there.  I am atypical they say.

Seems to somewhat amaze my docs as well.  So many signs of autoimmunity and inflammation with no pathological or serological proof.

In this case…

• Since I’ve tested positive once for the SSA antibody (Sjogren’s) this supports a mild Sjogren’s diagnosis.

However, mild Sjogren’s doesn’t account for the positive neurological  signs my body shows.  Few but more severe cases of Sjogren’s have a neuro component.

• My Gallium Scan showed no “hot spots”.  None of my salivary glands or tear ducts showed inflammation.  None of the areas of my body showed inflammation. The hot spots would have helped me get a slam dunk Sjogren’s diagnosis.   This means I will likely have a lip biopsy to try to confirm the Sjogren’s rather than a parotid or submandibular biopsy.

• My MRI showed no signs of inflammatory disease.

They are not sure what to do next.

The Big Nothing.  Again.

I want to cry until my tears run out and scream until my voice quits on me.

After that, I want to do many things my body simply can’t do.

No answers = no treatment

No treatment means that on an average day of doing average activity, my left foot drags on the ground.  The more I walk, the more my foot slaps the ground and the more likely I am to fall.  The more I walk, the more I limp and the more I limp, the less I can walk.  My body simply can’t make the movements.  With my right arm, I am now experiencing similar symptoms.  I am right-handed.  There’s pain involved but I can live with that if I’m living more.

I want to take a shower without needing help to wash my hair.

I want to go for a walk.

A run would be amazing.

A day trip would be so fun.

Up and down the stairs to do laundry would be helpful.

I want to feel refreshed.  Alert.  Competent.  Lively.

I want to be the strong, sharp businesswoman I once was.  Now, I mostly pretend.

I want to have the strength to carry my laptop.

Strength to pick up my little big boy for a full body hug.

Strength to accept that I will never be able to do these things.

I know intellectually that in the large scope of things, this is not the end of the world.  Right now, it sure feels like it.

The supportive and kind words from readers of my little blog mean so much.  Tonight, I want to post alone.  Thank you for accepting my need for solitude.

C’mon – there MUST be some sort of results somewhere.

When none of your doctors are returning your calls, you realize they are still working on your puzzle pieces, but you want them to tell you something.  Now!  PLEASE!

When all I have are images from my recent MRI along with my past MRIs, I play wannabe radiologist.  I pull all memories I have of Anatomy & Physiology class, Neurology class, and my other college Bio courses to find any clue, any information, any thing that can help me feel like I know what’s next.  I’ve played with the color lookup tables, and this is all I’ve got to show for it.

My designer brain. More like Radioartistry since I have no clue what I am doing.

So, please, excellent doctors of mine – call me.  Even if it’s just to tell me you won’t know anything for a few more weeks.  ‘Cause what I think is my optic chiasm sure seems to be showing increased signal intensity and I want to know what’s up.  And, http://imaging.consult.com/ is freaking me out.

Thank you very much,

Patient Q

Thank you for sharing the slideshow, Dr. Chwistek.

I often wonder why many physicians I’ve seen seem to lack empathy.  Particularly the docs who have blown me off completely.  I’ve learned that the doctor-patient communication success is all on me.

If I let anxiety or other emotions overwhelm me, a doctor isn’t going to reel me in – he/she will assume I am labile, depressed, faking or all three.  They don’t take the time to think what it must be like to be chronically ill.  To go to appointments expecting answers and respect and leaving with questions and diminished dignity.  It’s such a let down.  Anticipating that potential letdown is the worst.

One February 18, 2010, National Public Radio reported The Cleveland Clinic is hoping to increase empathy among its physicians. “Studies have shown that doctors who are more empathic are less likely to face malpractice lawsuits and more likely to have patients that comply with their treatments.”

Is that the goal of empathy?  Decreased lawsuits and more compliant patients?  Sheesh.

Empathy is an important patient-physician communication that many doctors seem to lack even when their patient’s seem to ask for it, according to a  09/22/08 study published in the Archives of Internal Medicine.

Researchers say that empathy, like other emotions such as guilt, is not something that matures on its own—it must be learned.

I’ve read of several initiatives where theater professionals and students, even at my Alma Mater, are trying to help physicians learn empathy “techniques” such as those being conducted by a pilot study by a Virginia Commonwealth University research team.

Tonight at the dinner table, my husband and I joked about the year of my childhood when I was given $4 by my parents to walk up to the store alone and buy my own birthday cake.  The only thing available for $4 was an Entemann’s coffee cake and that’s what I bought. I don’t recall any birthday cakes for me after that time until I was an adult on my own.

My son, being young, didn’t know what we were talking about so I summarized, “When I was a little girl, my mommy and daddy didn’t get me a birthday cake.”  My son looked immediately sad.  “Don’t worry, honey, me and Daddy will always make sure you have a birthday cake.” He hugged on to me so tightly.  “It was so mean that you didn’t get a cake,”  he said.  And he cried a few tears.  “It’s okay, honey.  I get cakes now.  Don’t worry.”  It took him a few minutes to calm down.  He held my hand.  I kissed his forehead.

My five year-old child learned empathy today.

It wasn’t my intention at all.  I tend to joke about my childhood.  My son put himself in Little Queen’s shoes.  I hope we can continue to teach him empathy.  He wants to be a doctor when he grows up. Right now he is interested in neurosurgery.

Perhaps there is a lesson for patients in this post as well.  When I shared the sad fact honestly, succinctly, and confidently, I received unexpected empathy.

As usual, I welcome your comments.

I’m having a recurrent dream.

My Primary Care Physician calls me and says, “I have your results.” And I say, “There was nothing.”  “Yep, nothing.  Everything came back normal. I’m so sorry.”

And from there I ask what Neuro #4 suggests we do next.  She says “it’s not neurological” and that I should see another specialist.

But what about the Neurological signs?  The lack of position sense? Weakness? Atrophy? Positive Ankle Clonus?  Sternocleidomastoid and trapezius spasm?  Blurry vision?  Unusually large pupils?  The likely Sjogren’s?

If you’ve read much of this blog, you know this has been the theme for me for the past 1.5 years.  It seems as though I might be getting closer to a diagnosis and treatment and then things change.

I hate my body.

I’m having trouble focusing on anything other than my desire for test results and answers.  Sometimes I feel like I’m finally on the verge of cracking, emotionally.  I get angry and feel like it’s not “fair” that I should be dealing with this.  That I’ve had my fair share and I want my life back.  I didn’t ask for this.  No one understands.  How have I been able to go through everything I have gone through and continue to work?  Continue to hope for a better day?  Continue to believe I will get answers?

Then I hate myself for thinking so adolescently.  I should be more accepting.  More grown up.

Thirteen of these collected for the tests below.

I look over my copy of the blood test codes and test names from my appointment with Neurologist #4.  Several are the old standards:  ANA (The one and only antibody I always test positive for but at different titers),  Sed rate, CBCD blood panel, CRP, C3 complement, C4 complement, SSA, SSB, and Vitamin B12.

Then I look up the rest of the list and draw my own conclusions as to what Neuro #4 is thinking is wrong with me.  I think he’s trying to rule out Lupus, Lymphoma, Multiple Sclerosis, and other possibilities.

Here’s a sampling of my blood tests links for more information when possible.

Coagulation Tests:

• Antithrombin III Antibody
• Lupus Anticoagulant
• Partial Thromboplastin time  (also explained at the link for Lupus anticoagulant)

Metals

• Copper
• Zinc

Infections/Titer

• Rapid Plasma Reagin-SST
• C3D Immune Complexes
• C2 Complement (see C3D)
• Immune Complex C1Q-SST  (See C3D)
• Cardiolipin Antibody
• DNA Double Stranded Antibody-SST
• Serum Immunoelectrophoresis
• Methylmalonic Acid-SST

And the big one – NMO-IgG – Sent out to Mayo Clinic. I can’t afford to go there but my blood can.

Why NMO-IgG is the Big One

NMO-IGg tests for neuromyelitis optica (NMO) also known as Devic’s syndrome/Disease.  It’s a demyelinating disease similar to and often confused with MS.

From Devic’s and NMO Worldwide Support:

NMO affects only the optic nerves and spinal cord. MS can affect any part of the brain and spinal cord
- Relapsing Remitting MS (RRMS) tends to change to a gradually progressive stage but NMO generally doesn’t
- Attacks of NMO are usually more severe with lasting disability, while initial attacks of RRMS recover almost fully.

NMO can also cause blindness.  When I talk about how I can deal with any illness, I neglect to mention that I can’t deal with being blind and deaf.  It’s not that I can’t deal with it, it’s just my worst, saddest nightmare.  I’ve been deaf for so long, it has a progressive cause and it’s been a challenge for so long.  I just can’t imagine also losing my sight.

Waiting.

I’m wishing I asked the Neurologist what he meant when he said he “I don’t think we’ll see you again in this setting.”  I didn’t ask because I didn’t realize at the time that the appointment was over.

I’m wishing for answers. Now!  I’m hoping for treatment.  I’m in need of hugs, love, and friendship. I want a good cry.

Do you ever feel like a ranting adolescent the way I have today?

Thank you for reading.  I always love hearing from you.

On day 2, the injection of radioactive gallium citrate, called the tracer, had

This pamphlet was so kitschy I could hardly stand it. Love it!

made its way through my body. I explained to the tech that I am a patient blogger and my fellow patients were also fascinated by the lead encased syringe.  The department now wants to check out my blog.

I was dressed comfortably in preparation for the test but was not told I also needed to have no metal on my clothing, similar to MRI requirements. So for day 2, I wore a hospital gown but could keep my pants on.  For Day 3, I wised up and wore a long sleeve shirt with no buttons and comfy pants.  My shoes were not removed either day and it was okay to keep my hearing aids in place.

It is my understanding that the metal in the Gallium Scanning process is more of a problem for ensuring accurate images rather than anything to do with magnets as in MRIs.

The Scan

I lied down on a somewhat narrow board with a pillow under my head and under

The scanner that scanned me. The top came down very closely to my body.

my knees.  The board moved me closer to the camera. It was a very gentle motion.  The machine was so quiet that I could hear other people from other rooms screaming.  They were all elderly.  My guess is no other patient in Nuc Med was under the age of 60.  Nuc med often includes heart, bone, and other scans. It’s my understanding that some nuclear medicine scans hurt.  The Gallium Scan didn’t hurt at all.

The camera looks like what you rest up against when getting a chest x-ray.  As you are lying on the board, the camera moves in different positions around you and all the way down your body for a full-body scan.  You must lie completely still. Valium helped me with this aspect.

Day 2 lasted for about 60 minutes.  For about 15 of those minutes, I had to hold my arms out  to my sides.  The nuclear medicine technician helped me move my arms to a platform to rest them during this portion.

Following Day 2’s scan, I was told by the Radiologist/Nuclear Medicine Technician that things looked good and the I received the worst, most unclear (look! an anagram of nuclear) medical instructions ever.

• Eat lightly for the rest of the day.
• Begin drinking 8 ounces of water every hour until bedtime.
• Drink 10 ounces of magnesium Citrate when you arrive home.

I asked questions but didn’t really get answers.  Drink the magnesium citrate

I recommend sticking with the Lemon Flavor.

when I get home from work at 6pm?  Start the water before then?  Either way, it worked out.  I drank all of the Magnesium Citrate by about 7pm and my colon was pretty empty by my 10:30am scan.

Day 3

The department was delayed about an hour.  Day 3 scan was much longer.  It is my understanding that it can take a few days for the tracer to build up in the body tissue so Day 3 is an ideal time to get lots of images.  The hardest part of day 3 was keeping my arms raised above my head for what seemed to be an hour.  With my lovely arm weakness and neck muscle spasms, my body was hating me more than usual.  Luckily, when I had the opportunity I asked for lots of blankets.  If there is one thing a reader can learn from this blog – always ask for blankets during any exam!

The technician told me the Radiologist/Nuclear Medicine Doctor wanted to do two series of 360 degree pictures of my chest and head.  I asked if this had something to do with the findings with my salivary glands.  The technician said, “With your thyroid?” and in typical Queen fashion I said, “I already know I have a tumor on my thyroid.  It’s not cancerous.  Is something else going on?”

I got no reply.

When all of the scanning was done, I met my husband in the waiting room and it had been nearly 3 hours!  I was told it would be about 1 hour 45 minutes total.  Wow! No wonder my arms got weaker and weaker.  I still managed to make it to work.

I asked for results, pictures, etc. and was told there were none available.  If it wasn’t so busy, I probably would have pushed the matter.  I don’t like to leave appointments without some info in hand.  This is my health, my life, and I’m the manager of it.

So there!

And there you have it.  A Gallium Scan.  I now have a pocket card stating I am radioactive for 30 days.  This is for if I want to cross the border or take a flight.  Sad thing is it says the reason I am radioactive is for tumor localization.  Gallium scans are often used when lymphoma is suspected.

Really?

We’ll see what comes.

I always love hearing from you.

Best,

-Q

The Gallium injection is stored in a lead box - it is radioactive and hazardous. This is the actual box that contained my injection.

I thought there was a lack of information about thyroid biopsies when I wrote my posts about that.  I thought there was a lack of information about muscle biopsies when I wrote about that but oh my!  There is an unbelievable lack of information for patients about Gallium Scans on the web. So, I’m back to add my experience so that someone else may find some helpful search results.

What is a Gallium Scan?
It is a nuclear medicine diagnostic test/exam.  A patient is injected with radioactive material.  Special equipment/cameras are used to look for infection in the body.

Why get a Gallium Scan?

In this case, I was told by my Neurologist that he wants to locate the parts of my body that may be inflamed due to Sjogren’s syndrome.  It may be the tear duct, parotid salivary gland, submandibular salivary gland, or other body part.  This will help prevent a possible fruitless lip biopsy.  If an inflamed area is identified, I will have a biopsy to confirm a Sjogren’s diagnosis.  The scan is a full body scan and will help rule out other possible infections.  Gallium scans are also used to identify some tumors/cancers.

Why is a Gallium Scan a 3 day test?
It is my understanding that the first day is simply for the injection of radioactive material; Day 2 if for a 1 hour body scan that will view the radioactive material in the body; and Day 3 is for a 1.5 hour body scan to continue to locate where the radioactive material has collected in the blood and organs.

How do you prepare for a Gallium Scan?
I was told there was no prep for Day 1.  However, I will receive some instructions on Day 2 for Day 3.

When I arrived:
I arrived at the hospital and was sent to Nuclear Medicine where I was greeted by a Nuclear Medicine Physician or Technician (not certain).  She was extremely nice.  She was kind about obliging with my photo taking for my blog and treated me with genuine care.   She gave me an overview of the injection procedure and my schedule for the next two days.

The Injection:

The Nuclear Medicine specialist first inserted an IV to ensure the Gallium material

My arm getting injected with radioactive isotopes from a lead covered/protected syringe.

would enter my vein and not my tissue.  She used a special lead-protected syringe full of gallium to inject me and protect herself from the radiation.

Preparing for the Scan:

Though there are no special preparations needed for Day 2 – the first scanning day, I will prepare by taking Valium to help me relax and stay still for the hour period of time for the scan.  Since I am taking Valium, I will have my husband drive me.  Otherwise, I would be fine to drive.  Depending on how the first scan day goes, I may decide I do not need medication to help me stay still for Day 3.  I am making my current decision based on some claustrophobia I have and the difficulty I had staying motionless for my MRI of the T-spine and L-spine, resulting in some unhelpful pictures.

More about what to expect with Day 2 to come!

Questions/Comments always welcomed.

Thanks!

-Q

I was taken completely seriously.

In fact, when I mentioned to a room full of medical professionals including Dr. B. about what University Neuro doc said to me , they all expressed shock, disapproval, and disbelief.  I am validated.

Dr. B. was both kind and attentive.  Before I started blabbing about this symptom and that, I asked him, where would you like me to start?

It began where this blog begins, my leg symptoms and how they have fluctuated between mild and severe for the past year but they never go away.  How my SCM and trapezius muscles began to spasm about  a month ago followed by a recent rapid onset of right arm pain and weakness.

Dr. B. asked great questions.  Questions that I could think about and answer.  My calendar of symptoms I have been keeping since July, definitely helped.  He was open to my questions for clarification.  Can you explain what numbness is like?  I’m not sure if I have it or not. In the end, I do have numbness.  My description of my numbness is a feeling like my limb is “dead” or like a rag doll.  I also realized my vision is more blurry than I thought, thanks to his careful exam.  I also have enlarged pupils.

NOT me. My legs are not manly or hairy (at the moment).

I learned that a lot of the pain I feel is joint pain.  I didn’t really realize this.  As I told Dr. B., I adapt, just as all people do.  I make accommodations without even realizing it.  If I’m having a rough leg day, I don’t wear jeans.  Jeans are heavier for me to lift.  I own lightweight shoes.   I know I have problems but can’t always articulate them because they are my new normal.  I move on.  I plan my weekends to the point that if I know I will be doing a lot of walking or standing, I counter that with rest time.  This difficulty keeping up concerns me.

Turns out I have reduced sensory responses.  I have positive clonus – 3 beats in my left ankle.  Brisk reflexes.  Differences in my right and left arms in terms of strengths and reflexes. And a whole host of other neurological symptoms.  Overall, this was the first very thorough neurological exam I received.

It is suspected that I have Sjögren’s with a strong neurological component.  Not a typical presentation and mine is rather rare in its presentation. It may be that I do not have enough cerebral spinal fluid for my brain and cervical spine to function properly.   This is different in scope from the Sjögren’s syndrome your Aunt Helen or Grandma may develop as they age and present with mostly dry eyes and dry mouth symptoms along with aches and pains.

I definitely have neuro signs but there are no lesions shown on my 2009 MRI which is good.  However, we must rule out other neurological diseases so I will be a super high tech 3T MRI. I was told I for sure do not have Arnold Chiari syndrome but nothing else was really ruled out as I show signs of both upper motor neuron problems and lower motor neuron lesions.  I got 13 vials of blood taken for more sophisticated tests than I knew were possible.

I will also get a gallium scan to locate what areas of my body are inflamed and what area is best to biopsy for Sjogren’s.  The lip, where my ENT was going to go, is not always where you can get a positive/accurate result.

I am so touched by Dr. B.’s treatment of me.  He was so kind.  He did for me what no other Neurologist did.  He listened.  He did a thorough exam.  He saw me, as me.  He even smiled when I expressed myself – the “real” queen.   And, it’s leading me somewhere.  I must be sure to thank him in a way that fully expresses my appreciation.  I did already hug him.  I’m a hugger.

My gallium scan is Monday.  It is a 3 day test.  More about that next time.

As always, thanks for reading and commenting. I owe WordPress a big thank you as well.  This blog has been such a great tool for me.  Without it, I don’t know that I’d have as many pieces of the medical puzzle coming together right now.

I believe I hit the mark today with a blazer, slacks, and casual-type shirt.  I felt confident and was taken seriously.

I have much to share about today’s appointment with Neuro #4 and his wonderful Resident MD, Dr. B.  But for now, I will sit and write from my heart and decide from there what I will post about my new information.

Thanks for the good vibes.  They worked.

I’m sharing a quote that has really had a positive impact on me today.

“No one grew up with plans to have a chronic disease. It just happens. Once it does, you have to do everything possible to live in the best way you can.”

I wish you all the best and thank you for reading.  As always, your comments and questions are welcomed and appreciated.

The fortune cookie paper with this statement remained taped inside my journal for years.  Then, a wise man told me, “those without expectations soon die.” And, that made a much bigger impression on me.  It’s my hopes and dreams that keep me going.

I've stopped eating fortune cookies.

Still, somehow I worry that if I get too confident about my Wednesday appointment with Neuro #4, I’m opening myself for a big let down.  Could I handle yet another big letdown?

Of course I can handle it.

Would I be disappointed?  You betcha.

In the meantime, I’m counting on him. His specialty is neuroimmunology.  Something I didn’t even know was a specialty.

From his bio:  He has been able to recruit nearly a dozen nationally and internationally known neurologists to his team resulting in a world class treatment center. “It allows us to take a team approach,” he says. “If we have an interesting or difficult patient we can grab someone and find out what they think.”

So, since I am counting on Neuro #4, I want to be sure I make the best impression possible.  I want to be prepared but not rehearsed.  Confident but not “know it all”.   And most of all, I want to be sincere, human, and able to keep it together.  I also want to be sure I understand what is going on.  I will ask questions and make my values known at the beginning of my exam.  (Thanks Dr. D – you’ve given me so much).

The big question is what to wear.

This may sound totally silly but I believe it impacts how I am treated.  When I go to appointments in my work clothes (business suits or other attire), I feel like I get treated differently.  Though Neuro #1 did ask once, “Are you going to work or something?”  The answer was “Yes.  In fact I work across the street.”  At University Hospital, I dressed on the casual side (plain polo shirt and jeans) and I’m not really the casual type.  I believe that had an impact on how that doc saw me as a busy Mom rather than a patient with real problems.

So, my dear fellow patients – do you think about what to wear to your appointments?  What do you wear?

Am I being ridiculous in asking this question?  Be honest, I can take it.

I’m even planning my hair style and makeup – subtle but enough to show I care about my appearance no matter what pain and limitations I have.

I’d like to hear from you.  And, I also ask for your good vibes.   Even though I know I can handle another letdown (I’m a strong lady), I’m wishing for help and/or an increase in peace of mind.

As always, thank you for reading and I wish you the best.  I look forward to reporting back on Wednesday.

The only sound I can hear is the low buzzing of my left hearing aid.  What is it like to be hearing?   Wondering what sounds I’m missing.

Where my arm feels best. It naturally picks the position at rest. Lightly clenched hand and all.

Breathing.

Must pull it together.  Can’t hear my own breath.  Convinced I look like I’ve been crying, no need to confirm with the mirror.  My son can’t see that I’ve been crying.  It breaks his heart.  I never want to break his heart.  You’ve had a bad day.  I have this feeling inside, I wouldn’t like me if I met me. The lyrics cycle through me every day.

On Medrol, I was different.   I needed less sleep.  I was energetic.  Productive.  It all wore off.  Right sternocleidomastoid and trapezius are spasming, my right arm is limited in its movements, and my right hand wants to remain against my chest in a light clench.

Unmanageable.

In Alcoholic Anonymous, Step 1 is “We admitted we were powerless over alcohol – that our lives had become unmanageable.”  I’m not an alcoholic.  I think I’m in need of a first step.

I am powerless.

I’m not functioning at my best.  My work is suffering.  I am physically suffering.  My family life is suffering.  My body simply can’t snap back from the 10 hour work days.  The volume of work. I don’t recognize this woman.  I knew a woman who had it together.  She never said, “I can’t do it.”  She made things happen.  This woman fails.

The faking is getting more difficult.  A conscious fake smile looks pained.  Wrong things said at the wrong time.  Exposed: my pain, my limitations, and the fact that things are unmanageable.

My Husband.  He doesn’t want it to be true.  He’s there to help me wash my hair. Kiss my forehead.  He understands that I have to work later and later because my work is harder and harder.  He’s not understanding it’s also because my body and mind are working slower and slower.   I don’t think he suspects that there is an unmanageable point.  He’s talking about moving again.  Finding a house that would be more accessible based on my limitations.  I don’t think he understands how close I am to no longer bringing in the income needed to pay for that house.   I don’t want to break his heart.

Unthinkable.

Comments are always welcomed.