medical mystery

Instinct

I’ve always had a strong sense of instinct and I have followed my gut all my life. Not to sound conceited, but I’m rarely incorrect when following my gut. That’s not to say I haven’t done stupid things in my life (like falling in love with Niall when he was never mine to begin with). My gut was screaming at me back then, about how wrong my behavior was. But clearly, I possess the talent for ignoring my gut instinct sometimes too.

But in regards to the medical mystery I’ve been battling, my gut was right. Despite the #1 expert in the field slamming the door in my face and canceling my first appointment, declaring he did not see an auto-immune process he could treat, that asshole was wrong.

For once in my life, I really wish I was wrong. But my instinct said I wasn’t. I kept pushing for more tests and practically have an honorary medical degree by now. I set about figuring out my case myself. And well, my dear friends….I was right.

Upon admission to Cedars Sinai Hospital in Los Angeles, I asked the admitting doctor to run a specific test. It’s in the admission notes that I requested it. Did they? Nope. And I never knew (until I ordered my medical records), that the rheumatologist overseeing my case failed to run it.

They don’t tell you shit when you are an admitted patient, my dear friends. They just don’t. Once you are admitted, you get visited by several doctors in your room. And they ask questions, poke and prod. And the entire time you’re kinda wondering, “When is anyone going to involve me in this discussion.” It’s honestly the strangest experience. I felt like I was some foreign alien while they looked me over, doing their consult.

On my own, I told them what I suspected I had. But I think their male egos wanted to somehow prove me wrong. Because my attacks (and the symptoms of that) equal very rare complications of the disease. I read their non-verbal behavior to say, “Yeah right, you have this disease. Statistically, it’s rare to find these symptoms in a patient, especially since your labs look great.”

But as my lovely eye doctor said to me much later in this journey, “It’s rare…until it’s in your chair.”

Am I angry? Of course. These doctors put me through hell, referring me to the director of MS believing I had MS. And I lived for over a month believing that the doctors listened to me, ruled out this auto-immune disease and somehow determined that I really had MS. But those fucking piece-of-shit doctors, that the #1 expert in the disease relied upon to do a thorough work-up on me, failed. And miserably.

Technology is a sector I follow and I had learned about a new test, comprised of 9 antigens which can detect this auto-immune disease in patients exhibiting symptoms for less than 5 years. It’s the newest test out there. Which is why basic logic says to order this, instead of the other antiquated tests which detect antigens only expressed when you are decades into the disease (or completely full blown).

My results came back last week: everything on the new test was normal but one antigen. I tested sky high on that antigen. There is no reason for my body to be producing this antigen unless I didn’t have the disease…and all the while, I was being dismissed by the doctors.

I’m angry. I have every right to be.

I want to send a certified copy of this result to every doctor who was brought into my case at Cedars, emblazoned with the these words: ASSHOLE- I was right! You FAILED. Please surrender your medical license so other patients aren’t put though the same hell your gross incompetence did to me.

….actually, maybe I will do that. I love that idea!!!!

But I realize my anger will only exasperate my condition….so I run. Or walk on my bad days. I’m managing my condition the best I can but some days, my symptoms flare to the point of being pretty damn difficult.

I’m not interested in being a guinea pig for big pharma. I want HSCT to cure me of this auto-immune disease. First, I must get the final diagnosis (yes despite this result that hasn’t been declared yet). Then, to convince a doctor to harvest my stem cells, give me 4 days of high intensity chemo to destroy my immune system and then reinject me with the new stem cells. It’s the only cure.

The only way out of this mess.

Changes

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.

Perseverance

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.

Life

When you are facing so many unknowns with your health, you’re no longer living but rather, just existing day by day. That’s pretty much me in a nutshell right now. I finally had it out with my primary care physician and spoke to her on the phone for over 35 minutes yesterday. It was painfully obvious, that she had little to offer in the realm of medical advice. I knew more than she did and had asked for a simple test to be run, to rule out celiac disease which accompanies this auto-immune disease that I suspect I have. It took me educating her on my symptoms and what they implicate, and how I need to rule this out too. It may not help us in our quest to get a diagnose on the auto-immune disease, but it may shed some answers either way.

The ANA and Rheumatoid Arthritis panel, CBC etc came back negative or within normal ranges. But that doesn’t mean anything. People go decades before they show as ANA positive. I suspect I am seronegative hence my results.

I initially thought this might be MS, but was hold by a few doctors that I would present clinically different. So I dropped that as a real possibility. However, something did come back as abnormal. It was my uric acid. According to how this lab performs the test, a reading of 3.1 or above is considered normal. Mine was 2.6 which means I am low in uric acid. This is not as common as being high in uric acid (which eventually leads to gout). When reading up on ways to increase my uric acid, I found that patients with MS show low uric acid during periods where their MS flares up.

Now in and of itself, low uric acid doesn’t point to much. But I suspect that my auto-immune disease also shares this clinical symptom. I know what I felt. And I know what I was going through for six solid days. My body was being the attacked and I felt something destroying my myelin or whatever is part of my central nervous system. I would hear an incredibly loud noise in my ears- like that low deep sound you hear when the TV goes blank and an emergency broadcast system message appears on your screen. Once that started, I would then feel heat in a certain part of my body. This attack it was all centered around my right eye. And that’s the eye that my optometrist found a vision issue which can’t be corrected. He’s fixed my prescription and out of the blue, I suddenly have a misshapened cornea, whereas my entire life, it’s been normal. I now have to wear weighted contacts that fit precisely on my cornea. Normal contacts move slightly when you blink. But I won’t be able to see out of that kind, which might explain the fuzzy vision.

Since I suspect this is an auto-immune disease, I have gone nearly vegan (I will eat salmon, tuna or other wild caught fish). I also have cut out all wheat, gluten and nightshade plants. I’m not going to lie. I’m going to miss visiting the top restaurants in LA for our weekly date nights. I can’t take the risk that some cook uses corn oil instead of avocado. I can’t put anything into my body that promotes inflammation. I had no idea just how inflammatory dairy, meat, corn, oils etc were to someone suffering through an auto-immune disease.

The good news is, I contacted an expert in this auto-immune disease. He is based in Los Angeles, wrote a book about the disease and even sits on the board of directors for the foundation that educates the public about it. If anyone can figure this out, it’s him. And- he’s agreed to take me on as his patient. I see him at the end of this month. Considering who he is and that other recommend rheumatologist said they couldn’t even see me till November, this was a huge blessing.

On an emotional level, I burst into tears last night, worried that I am still so young. I went 3 years between attacks. And I can’t help but wonder- Can I endure 3 attacks every decade? Will neurological damage occur at some point? Should I start recording messages to my children and leave them in an email account, so that they remember their mother…the one not affected yet by this disease?

Yeah that last one…that’s the one that made me bawl.

It’s just so hard. So hard to fight when you aren’t even sure what you are fighting exactly. Just weeks ago, I was running 25 miles a week. Today, I can barely walk 2 miles. I’m a fraction of myself. I’ve lost 6 lbs in a week and I’m trying my best to focus on not losing anymore. I haven’t been this thin since high school. And it’s not a good thin. It’s a sickly thin. I can see it when I look at myself in the mirror. I see more of my jaw and skeleton features coming through. I see it in my eyes. I’m not the same woman I was before our trip.

Even one of the regular checkers at Whole Foods pulled me aside and asked me, “Are you ok? You don’t look well.” And one of the other guys said just yesterday, “How are you doing?” I replied, “I’m doing somewhat ok today. Not as good as two days ago. I feel very weak and have a lot of fatigue.” We started discussing auto-immune diseases and he said, “It’s crazy how fast this all happened. Once second, you’re this healthy runner. And the next second, it’s serious.” I said, “I know. That’s exactly how it feels to me too. I lost 6 lbs in a week. I already saw I was going through muscle wasting. It’s incredibly frightening just how quick your body can go.”

And frankly my friends, I don’t know how far my body would truly last if I endured a sustained attack again. Everyone likes to think they are invincible. I know I surely did. Just weeks ago, I was posting push-up videos on my FB feed every day, cranking them out. I felt he strongest I ever have. Whatever this is, annialated me- and quick.

I know I have to push through. That I have to regain everything I have lost. And train hard to get my body in peak performance. But I can’t. Not yet. The fatigue is still too great.

But I am fighting. Know that much. 2CH is definitely a fighter and I’m going to learn everything there is to know about T cells and lymphocytes and cranial nerve damage and what my body needs to repair the damage caused from these attacks.

If if you get a chance, watch the Ted Talk from Dr. Wahl. She cured herself from MS. It has to do with diet and your mitochondria. And it’s fascinating stuff.

So that’s the latest my friends. Please continue to pray. I need it….Lots