So I switched hospitals.  I think I shared that this was something  I had been considering for a long time.  It took speaking to my primary doctor, who agreed, before I pulled the trigger.  I spent a considerable time praying over finding the right doctor.  And asking God to please bring me a doctor who will actually listen to my entire medical saga thus far.

Well this week, my prayers were answered.

I made an appointment with a local rheumatologist, yet part of the new hospital.  I wasn’t expecting much and frankly, was only using this appointment to “get into the system” at this hospital.  The MS doctor had already referred me to two rheumatologist, which are the best of the best doctors at the hospital.  They initially said I couldn’t been seen till spring of 2017 (yes- this is the reality of just trying to get a diagnosis people).  After many emails back and forth, and lots of pressure from my side, the MS doctor was able to get me in this year.

But now, I don’t even know if I will need them.  That’s how great my appointment went this week.

Introducing Dr. K.

I had nothing prepared to say.  But I came armed with 4″ of paperwork and all my MRI’s to date.  When she walked into the room, I just said, “I’m really happy to finally meet you.  I have a complicated medical history story.  And there isn’t one doctor who has bothered to listen to it all.  Will you be the first one?”

“I’m all ears”, she said.

For the next hour, I took her through every single twist and turn.  From my attacks in 2013 through to this year.  She took extensive notes during the entire story, frowned at various time (like when I shared the doctors suspected I had a tumor and I was rushed in for a MRI).  And she got angry at parts of my story, “Why didn’t that doctor see you?  What was his reason?!?”  And when. I explained how I lived for over a month, thinking. I must have MS since I was referred to the MS doctor, she said, “There is a constant battle between rheumatology and MS.  Both departments are constantly referring patients back and forth.  It’s a long standing battle, I’m afraid and it puts patients like you, in limbo.”  I hadn’t realized the politics and dynamics between these two departments, so it was refreshing to hear such a personal insight.

When I explained that I had ordered my medical records and that they were littered with errors, and that I didn’t have time to clean them up and wait 60 days for doctors to respond to my complaints she said, “Don’t worry.  I’m not going to be biased here.  But just so you know, the MS doctor wrote a very nice note in here about you.”

I presented my case and explained what disease I thought I had.  But that I was open to other theories, however no one had diagnosed me to date.  When I explained we had maxed out our deductible, she replied, “Well we are going to reorder every single test that has ever been done on you.”

I watched as her fingers feverishly pecked away at the keyboard, multiple times.  Then said, “Everything I do, from here till the end of the year, will be free.  Come January, I’ll be on the hook for everything.”

I shared all the supplements I have been taking and Dr. K said, “Great- going the all natural route.  You’re taking everything I would recommend.”

“For now, no medications.  I don’t want to mask any of your symptoms.  Let’s get all these tests run.  Review in two weeks- then make a game plan.”

I seriously love Dr. K.

Twelve vials of blood later, I left with a big smile on my face.  I finally have a doctor listening to me and managing my case.  There is one special test that can only be run by the actual hospital, so I need to drive there.  Between the kids schedules, that pushes that test out to later next week.  And that’s the one test which always comes back abnormal.

All in all, it’s been a good week.  I even ran a 10k race.  Although my time was four minutes slower than last years, I’ll take it.  I’ve been through hell and back all summer, so just to finish was my goal.  I thought I would have to walk the race.  But I didn’t.  I ran the whole way.

The fighter in me kept going till the finish line.

 

 

 

 

 

 

 

 

 

 

It’s been over three months now…and still no remission.  Nor diagnosis.  I’m functioning and able to get the kids to school.  But I’m certainly not at my baseline and my symptoms keep ping-ponging all around my body.

I can honestly say, I’m in a shitload of pain.  I’m not a wuss either but this is chronic, unrelenting pain now.  My joints and about 6″ above and below them feel like they are burning.  Deep within my muscle there is a searing pain combined with joints that pop, click and from time to time, blow up looking red.  I take photos each time that happens and when I showed the Chief of Rheumatology, he said, “I don’t know what that is.  We’ll ignore it for now.”

Unfortuntely, I don’t get the option of ignoring it.

I saw the MS doctor and she said I don’t have MS.  I’m pretty certain this is an auto-immune disease so it’s pretty much on me to manage my case.  Which means, I’m changing hospitals.  There’s really only three great hospitals in Los Angeles, so I’m hoping this switch will finally land me in the offices of doctors who want to really listen and dig at my case.

As a runner and athlete my whole life, I never thought I would say this.  But…medical marijuana is starting to look very appealing at 2 AM and your arms and legs are on fire.  I’m not into smoking pot whatsoever but this pain is breaking me.

It’s been three months since this medical saga started and still no diagnosis.  The hospital stay came to 30k (gotta love American healthcare costs–$860 for a vitamin B12 blood test, I kid you not!).  Thankful, we have excellent insurance so I’m not too worried.

I’ve had three MRI’s which are $6500 each.  Add in all, with the specialists, lab/radiology and doctors appointments (15 visits and counting), I think we’re hitting 75k worth of medical charges and still no diagnosis.

I saw the Director of all MS for one of LA’s most prestigious hospitals and she said for sure, this isn’t MS.  She thinks I have some underlying inflammatory disorder.  No shit Sherlock.

My day starts with applying Lotamax in each eye, which means I can’t put my contacts in for 30 minutes as the medication works.  I then stumble into the kitchen blind for a probiotic that I take first thing. Then I take 4 horse sized omega pills to help with my chronic dry eyes.   Then comes the vegan multiple vitamin and B complex pills.  Followed by turmeric and 6 Evening Primrose pills.  My eyes are so dry, I have to hydrate them with special drops now before I can put my contacts in.  And often,  I have to repeat the entire process- removing the contacts to rehydrate my eyes for a second time, then reinsert my contacts.

All of that…and I haven’t even gotten ready yet!  The clock seems to be ticking and time keeps flying by and I’m stuck fighting this mystery illness and handling my symptoms.  In a nutshell, it’s been pretty hard.

I’ve had to face the prospect of maybe having a tumor in my brain (thankfully the doctor was wrong and the brain MRI came back clear).  I spent weeks thinking this may be MS, which obviously wasn’t an easy thing to contemplate.  I’m a deep researcher and I was already half-way to signing up for HSCT and heading to Mexico for treatment.

As of right now, I know my immune system has been fighting something. Two labs came back abnormal: cryoglobulins and my C3 was low.  And I’m starting to think all my crazy symptoms may be caused by a virus.

I lost a lot of weight during this.  And every time I run into someone now, they always say, “Wow you look amazing.  What are you doing?” It’s very strange to look in the mirror and seeing the perfect body, yet knowing you didn’t do anything to deserve it.  And it’s strange seeing a body that looks healthy, yet isn’t.  They usually follow it up with, “Did you spend the entire summer working out?”  And that’s when I finally say, “Actually no, I spent the entire summer battling a mysterious illness.”

Usually they shrug up their faces.  People don’t really know how to react.  And I’ve figured out that most people don’t want to hear anything negative.  But not everyone.  I’ve gotten a huge amount of support, love and prayers from people I would never expect.  And that’s been surprising to say the least.

Maybe this is a common experience but keep that in the back of your mind, should you ever fall ill. You’ll notice who your friends are…and aren’t.

This is going to totally show my age, but the children’s TV program Mr. Rogers use to say on his preschool program, “Look for the helpers” when there is a tragedy.  And during this, I see many helpers popping up in my life, checking in on me- offering to come along to appointments etc.  I feel like each and every one of them has been used like an angel in my journey to a diagnosis.

And then there is my husband.  He has been my rock.  He has been my everything through this.  And he has stepped up more than I’ve ever seen.  The affairs don’t matter.  They are long gone, forgiven- and in the rear view mirror of our marriage.  God has given me a new set of eyes for my husband.

And that’s the hidden blessing in all of this.

Well a lot has happened since I last posted.  I still don’t have a diagnosis.  I was admitted to the hospital after I emailed the disease expert a photo of my knees.  I woke up one morning and they were both red and swollen looking- hot to the touch.  For several days after, they felt like the knees of a 90 year old- burning and achy.  That’s never happened before and I was worried that it meant I was about to flare up and potentially have another attack.

So the disease expert said to go to the hospital.  He was traveling but said his fellows would admit me, which they did.  I was there for 3 days while tons of doctors came into my room, asking me all sorts of questions.  And not once listening to my entire medical story.  I got poked and prodded and asked, “Can you feel this?  Is this sore?  Can you open your mouth and pull down your bottom lip?”  It was weird.

One doctor came into my room alone and I finally asked, “Can we talk off the record?”  He nodded yes.  I threw out my best guesses regarding what this could be, and he said, “It’s pointing in that direction.  But you need to be patient.”  Then they discharged me.

To be honest, all my labs look pretty good (heck they should.  I’ve always taken such great care of myself).  My ANA which indicates an auto-immune disease came back at 40 on the dot.  Usually if you have an AI disease, your numbers will be much higher.  Mine is the lowest score you can have to even test positive.

Other than that, the hospital hasn’t found much. They gave me a referral to a neurologist and she’s the big kahuna in the field of neuro diseases. In terms of a referral, you can’t be seen by anyone more experienced than her.  So we wait.  She can’t fit me in until the end of September. But I phone each day asking if there has been any cancellations.  My discharge orders said to be seen within 1-2 weeks.  So this isn’t ideal.  I need to see her sooner.

I reached out to another doctor and he ordered a bunch of brain MRI’s last Friday. I spent 1.5 hours laying in the tightest tube ever.  It was an older model machine and they didn’t even have headsets (just ear plugs).  At the last minute, that doctor ordered tons of extra views: specific nerves, optic nerves, brain stem and the entire brain itself.  I’m glad he did it, but it was really hard to be in that machine for so long.

My newest symptom is my heartbeat.  It’s racing for no reason and waking me up in the middle of the night.  So I saw my primary doctor yesterday (and btw-she blows as a doctor and this is completely above her pay scale-I need a better GP).  Anyways, I am now wearing a high tech heart monitoring device and she’s ordered another MRI, this time of my spine.

I’m hoping all of these tests will provide all the clues that the neurologist needs in order to make her diagnosis.  But I have a feeling, there will be more tests which she orders.

I’ve lost a shitload of weight.  All my shorts and jeans are baggy on me.  I bought a new pair of jeans and shorts as an interim measure.  I don’t like being this thin and want my more fit looking body back.  But the scary thing is, I fit into skinny leg 26″ jeans and a size 0 short.  I’m pretty certain I’ve never this thin.  And that scares me because if I endure another attack, I can’t see my body doing well by losing another 15 lbs.  I’m pushing food into me all day long but it’s like my body keeps losing weight.  It’s as if whatever disease this is affects your metabolic rate.

Please continue to keep me in your prayers.  It’s been the hardest two months of my life.