Evolving...

Had a ridiculous anxiety moment over the weekend over meeting the doctor again this week.  I take heart in knowing that my reaction is normal.

The basics from the appointment.

One, my Hughes Syndrome tests came back negative!  No more aspirin, if I want.  He said with my family history of heart disease it can't hurt to take an aspirin a day.  We are questioning not taking it, only because several of my muscle symptoms did seem to improve upon taking the aspirin.

The blood says it is NOT Lupus.  No way, no how, he said to close the door on that one.

What he says I do have is low Vitamin D and ''evolving fibromyalgia''.

First, the question of my vitamin D.

It seems my body just doesn't know how to synthesize sunlight anymore.  And unless I consume huge amounts of dairy and fatty fish, the number is not going to rise.  All this California sunshine is a waste on me, how sad!  I was told last November that my vitamin D numbers were fine after the eight weeks of 50,000IUI.  A mere six months later and levels are at a twenty-five!  Last June it was a twenty-seven.  Dr. Reuda explained that the range is thirty-two to sixty-five with the optimum number being a 50.

I was prescribed 2000IUI daily for 6 months.  He wants to see how many of my symptoms go away and which stay.  I pulled the list below off of webmd and don't actually suffer from all of them.

There is no clear pattern of symptoms. In fact many people remain asymptomatic despite low levels. But here are the more common symptoms

• Fatigue
• General muscle pain and weakness
• Muscle cramps
• Joint pain
• Chronic pain
• Weight gain
• High blood pressure
• Restless sleep
• Poor concentration
• Headaches
• Bladder problems
• Constipation or diarrhea

I highlighted the symptoms that bother me the most.  Several other websites and articles name depression and anxiety as well.  I am curious to see if the vitamin D treatment lifts my need for Prozac or makes a reduced prescription level possible.  Rich is against this right now and I'm trying to see it from his point of view.  In order to ensure continue matrimonial harmony we have tabled this discussion for now, to avoid a ridiculous argument over a theory being tested and not proven yet.

The only thing left is to see where the fibromyalgia goes, how it develops.  I have six of the eight trigger points and overlapping symptoms with the vitamin D deficiency.  Dr. Reuda's theory is the symptoms left after six months are the primary or secondary disease we are working with.  Auto-immune disease evolve over time, mine isn't finished with me yet.

I continue to tweak my diet.  No artificial sweetners, no soy, no sodas, no dairy, reduced beef consumption, reducing processed foods, and working on reduced gluten intake.  I have noticed a strong correlation to carbs/processed foods and muscle pain/fatigue.  There is a list of the 52 superfoods on my fridge for reference.  I try to incorporate two superfoods into every meal I eat.  

The last ten months have been running head long at testing, MRI's and the revolving doors of medical offices.  We've gone through testing for the scariest, most complicated diseases to come back to the simplest possible answers.  I've learned to go with the flow, accept my daily life as it is, and wait to see what the future is.

Doctor......

I returned to the neurologist after two months.

Trent was with me for the return visit.  I prayed better behavior would happen this time.  Two months ago my kids terrorized exam room in a monkey-like madness sure to convince anyone of the usefullness of birth control.

The nurses were charmed by race car noises from the waiting room.  Francesco and Lightening McQueen sped across every piece of furniture, crashing into fake plants and chair legs.  The cars were tailed by a child full of giggles and animated noises.

When it was time to go back to the exam room McQueen found the power to fly invigorating until his cohort stumbled and found linoleum.  With cat-like reflexes both owner and car gained their feet quickly. The nurse was once again amused, mommy was praying that was the last of the drama.

Have I mentioned how much I like doctors out here?  Dr. Alahi walked in RIGHT on time at 10:30am!

He had received some of my blood work from the neuro in Georgia and had reviewed my MRI imaging from last summer.  The concensus is no MS, most possible diagnosis is fibromyalgia with a hefty side of Hughes disease to round things out.  Lupus is a vague, dimming worry at this point.

We discussed the potential of 'fibro-fog' and my definite need for 8+ hrs of sleep per night.  Lack of rest only makes the fog worse.  Dr. Alahi played some memory games with me to test a few things out.  He would like to run another MRI to check for hyperintesity advancement or new spots.  An EEG is needed to test electrical impulse strength throughout my brain.  My understanding is that baselines are being set to track progression of the disease from every angle.

Meanwhile, in Trents' world he got to entertain the student doctor from UC Irvine.  Fascinating him with his knowledge of colors, shapes, planes, trains and potty training.  Oh yes, he went there!  The mommy ears caught the cherub voice say, ''In the potty, I go BiiiiiiiiG pee pees.  Is yuuuuck yuucky.''  It could be worse, he could have demonstrated for them, right?

Dr. Alahi stopped asking ME questions to verify what he had just heard.  Yep, yep you heard him.  I apologized and explained that we are newly potty trained and enamored with our bodily functions.

At that, we all declared it time to go before anymore excitement happened.

Doctors....when they finally listen

I am blissed out.

The doctors here in California LISTEN to patients.  And take time to really ask questions.

I met with, Dr. Castro, my new Rheumie.

His opinion, most likely fibromyalgia with a smidge of lupus on the side or no lupus at all.  The Hughes Syndrome is there also complicating things.

He's redoing all my blood work from six months ago.  He wants a fresh look at all the numbers, he's sending the blood to a lab specialized in rheumatic disorders.  Read: they KNOW what they are looking for.

Other things being run.....thyroid, Vit. D, B6 and B12 panels.  All of these were low, but no one in Georgia was paying attention to them, saying they weren't low enough.  Dr. Castro pointed out that low for one person is different than another.

The treatment plan for now.  Keep taking aspirin a day.  Keep moving!  Keep eating healthy.  Rest when you are tired.   Rest at night.

The best part was this statement, ''Fibromyalgia IS a disease, no matter what you read.''  There are a lot of articles and insurance plans trying to discredit this diagnosis as made up.  Glad to hear that the doctor is on my side.

And another Theory

UGH!!!!!

This diagnosis process is so frustrating and emotionally taxing.  We are now start month 5, yes, month 5 of tests and doctors and blood.

The Rheumo was more personable yesterday, so that was a saving grace for me.  He says all my Lupus numbers are borderline positive so we need to 'wait and see'.  Ok, I can do that.  I was also told that my uric acid is double the normal level, so the Gout that runs in my family is headed my way.  Just one more health similarity I have to my dad.

So now, it's on to the Hematologist next week.  When I explained the order to start taking baby aspirin daily to the Rheumo and spots on my brain he said, ''oh, positive lupus anti-coagulant tests, vasculitis. hmmmmm.''   Lupus anti-coagulant is NOT lupus, just a misnamed blood disorder.  The vasculitis refers to the hyperintensities on my brain MRI, where blood flow has been cut off and caused the little dead spots of tissue.

The sticky blood problem I might have comes under a couple names.  APS/Hughes Syndrome and is only recently discovered in the early 80's.  It comes with whole host of potential health problem, but there is treatment.  Oddly, it can mimic MS so they have found many patients misdiagnosed with MS with actual Hughes Syndrome.

Many of my symptoms line up with this problem, so maybe we've found the next theory.  I just want an answer, want to know what I'm fighting so I can move forward!  The emotional limbo is torture, more so than any problem I'm having.

This Diagnosis

Well, we are getting closer to knowing WHAT is going on with me.  The doctors have been acting like vampires for the last 4 months taking copious vials of blood.   Not kidding here, at least 65 vials have been drawn since the middle of June. And then there was redrawing of blood, because the first blood was tainted when it got to the lab.

There's the insurance now asking the Rheumotologist to please call them personally because they want to know WHY a third MRI has been ordered.  This one is just of my right hand.  The big ones were the head(in July) and then the spine MRI about three weeks ago.  The spine one I was in a tube, like a coffin for two hours.  No so fun.  They tried to brighten it up a little by putting star stickers like you get in kindergarten on the ceiling of the tube.  Bwahahahaha!  Still not fun.

The Rheumo has absolutely no bedside manner.  Very abrupt and ''ok, see ya when we get that blood work back have a great day''.  Yeah, I'll just keep hanging on the bare threads that remain of my bravery, thaaaaat'll get me through another month of the unknown.  Maybe I have him to thank for sending me over the edge into the panicked abyss again.  It was awesome, two whole days I don't remember and two really fuzzy ones last week.  Better now, meds are good.  I think I might keep them for a while.

Hope you all can keep up the the abbreviated specialist names because I can't spell them and neither can spell check here on blogger.

I still have to see the hematologist because the latest blood panels for Lupus have come back positive.  There is some small percentage that they could be wrong, but ''probably'' not based on my blood work and symptoms according to the Neurologist.  So we are GUESSING that the culprit is Lupus at this point and not MS.  For some reason Lupus seems doable and MS is just scary SH**.  Sorry, I normally don't cuss but I'm passed correctness right now.  Four months in emotional limbo does that to ya.

The Hema is suppose to call me, hasn't happened yet.  Might start pestering them tomorrow, ya know whole California move is looming and what not.

Going back to the therapist to talk out the new more life altering craziness.  Rich went with me for the first time last week.  Can't love him enough for that.  Lots of the big life questions to get straightened out.  Existential this and that.  Learning to live with dependencies and weakness.  Deep stuff.  The kind of uncomfortable I hate to feel, but probably need too.

So, that's the diagnosis so far.  In short, we still don't know, think we might have an answer, but in the meantime trying to maintain mental and emotional stability.