Update Part 3: The Cardiac MRI

Continued from Medical Testing Updates Part 1, Part 2, and Part 2.5


Despite the numerous amounts of medical testing I have been exposed to over the years

in my search for a diagnosis, I had yet to have an MRI.

I’m usually pretty calm about medical testing, unless of course I have to EAT or DRINK contrast – because that is an entirely different beast on its own – but I had heard so many horror stories about MRI’s over the years and I was actually a little nervous.

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Although I don’t consider myself to be claustrophobic, per say, I do have a REALLY hard time sitting still. And it’s REALLY important to stay still when the machine is taking images and they usually take a lot longer than other radiological tests, like a CT scan or a simple X-ray. I was so stressed I wouldn’t be able to make it through the whole thing without messing up the exam. Given, I do have ADHD but that wasn’t necessarily driving my fear, although it does presents its own problems with not being able to move at all.

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Mainly, it’s my usual course of symptoms that make lying still almost impossible at times. My joints lock up when I stay in one position for too long and when I am nauseated, forget it – there’s no way I can stay calm and immobile. If I don’t move around or am FORCED to lay down when I feel like I’m going to vomit, I panic. So, of course, I am extremely anxious as I’m changing into my sexy hospital gown and getting ready for the test, because if you remember from my last post  I was quite sick with symptoms that suddenly came on during the long drive to the hospital that morning.

Not to mention, the horror stories:

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5018I take off all my jewelry. My hair clips. My headband.

I’m paranoid that I forgot some metal in my body.

I really really really don’t want it torn violently out my body by this giant, magnetic machine.

Just when I think I am good, I remember one more piercing.

Damn, that was close

I wonder if the gadolinium cause a reaction similar to the iodine (in CT Scans)?

Please don’t let me get violently sick…

I really hate the unknown…

But I either do the test or live with the unknown forever.

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So, What Is Cardiac MRI?

 The photo shows a patient lying on a sliding table outside of a cardiac MRI machine. The table will slide into the machine, and the patient will lie quietly while the machine creates pictures of the heart.

Magnetic resonance imaging (MRI) is a safe, noninvasive test that creates detailed pictures of your organs and tissues.

MRI uses radio waves, magnets, and a computer to create pictures of your organs and tissues. Unlike other imaging tests, MRI doesn’t use ionizing radiation or carry any risk of causing cancer.

Cardiac MRI creates both still and moving pictures of your heart and major blood vessels. Doctors use cardiac MRI to get pictures of the beating heart and to look at its structure and function. These pictures can help them decide the best way to treat people who have heart problems.

Cardiac MRI is a common test. It’s used to diagnose and assess many diseases and conditions, including:

Cardiac MRI can help explain results from other tests, such as x-rays and computed tomography.

Doctors sometimes use cardiac MRI instead of invasive procedures or tests that involve radiation (such as x-rays) or dyes containing iodine (these dyes may be harmful to people who have kidney problems).

A contrast agent, such as gadolinium, might be injected into a vein during cardiac MRI. The substance travels to the heart and highlights the heart and blood vessels on the MRI pictures. This contrast agent often is used for people who are allergic to the dyes used in CT scanning.

People who have severe kidney or liver problems may not be able to have the contrast agent. As a result, they may have a noncontrast MRI (an MRI that does not involve contrast agent).

What To Expect Before Cardiac MRI

You’ll be asked to fill out a screening form before having cardiac MRI. The form may ask whether you’ve had any previous surgeries. It also may ask whether you have any metal objects or medical devices (like a cardiac pacemaker) in your body.

Some implanted medical devices, such as man-made heart valves and coronary stents, are safe around the MRI machine, but others are not. For example, the MRI machine can:

  • Cause implanted cardiac pacemakers and defibrillators to malfunction.
  • Damage cochlear (inner-ear) implants. Cochlear implants are small, electronic devices that help people who are deaf or who can’t hear well understand speech and the sounds around them.
  • Cause brain aneurysm (AN-u-rism) clips to move as a result of the MRI’s strong magnetic field. This can cause severe injury.

Talk to your doctor or the MRI technician if you have concerns about any implanted devices that may interfere with the MRI.

Your doctor will let you know if you shouldn’t have a cardiac MRI because of a medical device. If so, consider wearing a medical ID bracelet or necklace or carrying a medical alert card that states that you shouldn’t have an MRI.

If you’re pregnant, make sure your doctor knows before you have an MRI. No harmful effects of MRI during pregnancy have been reported; however, more research on the safety of MRI during pregnancy is needed.

Your doctor or technician will tell you whether you need to change into a hospital gown for the test. Don’t bring hearing aids, credit cards, jewelry and watches, eyeglasses, pens, removable dental work, or anything that’s magnetic near the MRI machine.

Tell your doctor if being in a fairly tight or confined space causes you anxiety or fear. If so, your doctor might give you medicine to help you relax. Your doctor may ask you to fast (not eat) for 6 hours before you take this medicine on the day of the test.

What To Expect During Cardiac MRI

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*For some reason, my MRI was scheduled for an hour and a half:

30-minutes blood work & prep, then  1-hour scan*

Cardiac MRI takes place in a hospital or medical imaging facility. A radiologist or other doctor who has special training in medical imaging oversees MRI testing.

Cardiac MRI usually takes 30 to 90 minutes, depending on how many pictures are needed. The test may take less time with some newer MRI machines.

The MRI machine will be located in a special room that prevents radio waves from disrupting the machine. It also prevents the MRI machine’s strong magnetic fields from disrupting other equipment.

Traditional MRI machines look like long, narrow tunnels. Newer MRI machines (called short-bore systems) are shorter, wider, and don’t completely surround you. Some newer machines are open on all sides.

Cardiac MRI is painless and harmless. You’ll lie on your back on a sliding table that goes inside the tunnel-like machine.

The MRI technician will control the machine from the next room. He or she will be able to see you through a glass window and talk to you through a speaker. Tell the technician if you have a hearing problem.

What to Look for in Results?

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(All information taken From the NIH Website.)

But it honestly wasn’t that bad.

In all truth, it was one of the easiest tests I’ve had done, despite the length of time and immobility. Way better than barium swallows or having to eat disgusting, bland food with nuclear isotopes in it, that’s for sure.

Maybe it was that I was super tired from the drive or from being woke up the night before, I dunno, but I didn’t even feel the need to move at all. Plus, I got headphones to listen to the radio station of my choice… Indie Rock it is. I closed my eyes and fell into sleep. The hardest part was staying awake and focused enough to breathe when they told me to breathe a certain way. And zero nausea during injection of the contrast (no “sunburn” or an allergic reaction following either, unlike with iodine, thank god).

I did hold my breath in fear when the machine first turned on, however, but only because I was paranoid about the prospect of having missed some form of metal being left in my body. Luckily, all was good. I just hoped the results would be the same.

My anxiety was gone, realizing I was nervous for nothing – as usual.

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Next on the list: Exercise Stress Test…

Medical Testing Update Part 2.5: New Symptoms

Continuation from Medical Testing Updates Part 1 and Part .


The weekend before my next round of cardiac testing started off pretty average, at least as far as my symptoms anyway. Having just recently recovered from the peculiar reaction I had to the one dose of the new beta blocker the cardiologist prescribed (before I was taken off of it when additional cardiac testing was ordered), I was relieved to have a so-called “break”. While I’ve learned to manage life with my usual, everyday  symptoms, the real struggle happens when these symptoms either  intensify or another one jumps in the mix, making everything that much more complicated and impossible. I kept myself busy through that Sunday afternoon, trying to catch up on everything that had fallen behind and allowing myself to forget about the news from the week before. Perhaps it was all of the stress I was under, I dunno, but that night things everything began to take a turn for the worse.

too much

Given, I had been pushing both my mind and body past the limit by adding more and more things to my to-do list. Honestly, it was way more than I was capable of handling all on my own. Half of this was my own fault for saying yes to too many things, but the other half involved stuff that was dumped in my lap last minute and they were things that I had no choice but to fit into my schedule.  Either way, there was no time for any type of rest or recovery and I knew it wouldn’t be long until my body would decide to revolt against me for treating it so badly the last few weeks. Sure enough, I didn’t have to wait that long.

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Exhausted, I climbed into my brand new bed and was so excited that I’d finally be able to get a good night’s sleep before my cardiac MRI the following morning. It must have been about 3 a.m. when I was awoken suddenly by a pain in my chest. It wasn’t a sharp pain really. More of a dull, yet stabbing, kind of pain and I noticed that I was a little wheezy and that my nose was also starting to get stuffy. Am I getting a cold? Just what I need right now, with all I have going on. Hopefully, it is just allergies, I think to myself, and  I climbed out bed to find  some medicine so that I can go back to sleep. I take some additional allergy meds, aside from my daily dose, and hope that it’ll do the trick.

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I attempt to go back to sleep, but it was very short-lived. Just as suddenly as the ” cold-like” symptoms came on, next was the onset of extreme abdominal pain, generating from both my right and left side, and gradually moving into the small of my back. Usually, the abdominal pain is focused to my left side, although occasionally I feel it either just above my belly button or lower in my pelvis, just depending on the cause that day. The amount of pain with this, though, was unreal and I have a high tolerance for stomach pain.Shortly after the abdominal and back pain set in, both the muscles and joints in my hands, arms, legs, and feet began to swell  slightly, but they instantly became very  stiff, making it nearly impossible to find a comfortable way to lay down. Still, while the way that everything set in was slightly atypical for an incoming flare-up, it was nothing I hadn’t experienced before and I just assumed I had done too much. In fact, I was actually kind of grateful that it wasn’t a cold or virus coming on.

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At some point during the night, I must have fallen back asleep. My alarm woke me a few hours later and I was actually surprised that I didn’t feel worse than I did. Most of the symptoms from the night before (well, really a few hours before) had gone away, which again, I was grateful for as the ride to the hospital is about an hour and a half away. Not to mention that the MRI itself was supposed take anywhere from an hour and a half to two hours on its own, plus the drive time back. The unfortunate part of seeing doctors in a bigger city, it makes for a really long day.

Anyways, my husband and I get in the car and start the long trek to the main hospital. About 20 minutes into the drive, more random symptoms. All of a sudden, it felt like morning medications were coming back up and becoming lodged in my chest and throat. The nausea increased so hard and so fast, it took everything I had not to throw up in the car. I was plagued by a strong, metallic taste and my muscle began to burn. And not just burn, they felt like they were on fire.

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Yet, despite all these symptoms and how uncomfortable the car ride had become, I still wasn’t overly concerned.  I was just happy at the fact that I was having active symptoms during the time a test was going to be performed, hoping it would increase the chances for additional findings.

Sadly, this is what it has come to these days –

I’ve resorted to praying for illness and pain,

just so I can get some answers.

By the time I finish the MRI, symptoms are gone. Once we got home,  I decided to take a nap since I didn’t get much sleep the night before and, yet again, I awaken to -you guessed it- the same thing. If it wasn’t so painful, I would have been extremely angry and irritated but this time around, it was hard to convince me that I was truly burning from the inside out.

The only way I can describe this sort of pain I’m experiencing is by relating it to how it must feel just moments before you spontaneously combust.

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I’m in tears with how bad it burns. My skin is literally hot to the touch, unlike earlier in the day, and starting to change color. It looks like I have been out in the sun all day tanning, even though I obviously had not. There’s no bumps, no itchiness, no rash. Just burning. And it’s coming from INSIDE of my body –  just under the skin, almost on top of the muscles. No lotion or medication can relieve it, not even the arsenal I keep in my medicine cabinet.

Maybe I didn't roll enough...

Perhaps I didn’t roll long enough. 

And not only is the burning constant and consistent throughout 75% of my body, it  continues on for hours and hours on end, lasting approximately 9 hours before it was all said and done.

As if that wasn’t enough, other symptoms begin appearing as well during this “outbreak”. My heart starts racing, making my body feel like it  is running a silent marathon inside. Next I start trembling and shaking, only making me more dizzy and nauseous, before initiating more traditional feelings of pain to the right side of my face, including the throat and jaw. When the pain moved across my chest and down my left arm, I really got scared.

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Oh my god- I’m having a heart attack.

At least that’s what I thought anyway.  In all reality, though, I really wasn’t.  

But you can see how I’d think that given the most recent test results and the amount of stress I have put myself under lately.  I guess this was a friendly reminder that I need to make rest a bigger priority. Besides, have you ever looked up the common warning signs of a heart attack in women?
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I pretty much live with these symptoms every day.

How would I ever know if I was truly having a heart attack?

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Still, I have no idea what this was or the cause of it.Thankfully, the cycle stopped after just three days of on and off random symptoms, but I haven’t experienced any since. *Knocks on wood* 

Perhaps something was caught on my MRI. I guess I’ll ask about it at my follow-up appointment with cardiology if it comes back again.

new symptom


To be continued…

Medical Testing Update: Part 1

I’m not entirely sure which is worse:

Having every test comes back normal and

you have no idea why you feel so horrible everyday

-or-

The sudden onset of one abnormal test after another,

slowly taking away any hope of you ever feeling better.


I’ve dreaded  writing this post, mainly because I still have so many more questions than I do actual answers at this point, but the final test results should be revealed at my follow-up on Wednesday and I figured that there is no time like the present. Well, there’s that, and also the fact that I want to share these findings in their entirety and explain exactly why I’ve been so quiet lately.

So much to say and not enough time or energy to do it all at once.

So this post will be broken down between a few different parts.

So much has gone on in the last couple months. These days, I don’t know what is connected to what anymore, particularly when it comes to my symptoms. I always knew that my diagnosis wouldn’t be a simple one, but it seems like every week now the doctors add one more new problem to the list. It’s been a lot to take in, especially because life keeps throwing in additional added stress that I honestly could do without currently. I haven’t had much time to think about anything, let alone process what this all means. I honestly haven’t even been able to research these results like I normally would, thus being left with so many unanswered questions. The doctors may lose it when I walk into my follow-up appointments with the two-page list of questions that I’ve already put together without even really trying.

If you remember from my earlier posts “Welcome to the new age” and “Oh doctor, doctor…”, tests had just come back, confirming I had three vascular compression syndromes (Superior Mesenteric Artery Syndrome, Nutcracker Syndrome, and May-Thurner Syndrome) as well as POTS (Orthostatic Tachycardia Syndrome), and I had just started care with a new cardiologist, who just so happened to notice some irregularities in my earlier cardiac tests from back in 2005, and again in February 2014 (but the results were dismissed by two different doctors for being “insignificant”). Anyways, he decided to order some follow-up testing before referring me over to the dysautonomia research clinic at the university’s medical school for treatment, hoping they’d also be able to refer me to one of the very few doctors in the country that treat the vascular compression disorders. I had honestly believed going into this round of medical testing that these tests would be (again) a waste of time, as they have been “insignificant” for 10 years now. I knew, though, that once these tests were finally completed that I’d be able to begin treatment for [at the very least – one part of] my illness. Obviously I obliged. I also had one more test that my GI doctor had also ordered, but figured that the non-stop medically testing was almost truly over. Finally!

But I was wrong… so very wrong.


Initially, the cardiologist ordered two tests:

Echo1. Echocardiogram with contrast.

 An echocardiogram is a test that uses sound waves to create pictures of the heart. This test is done to evaluate the valves and chambers of the heart from the outside of your body.

An echocardiogram can help detect:

Abnormal heart valves

Abnormal heart rhythms

Congenital heart disease

Damage to the heart muscle from a heart attack

Heart murmurs

Inflammation (pericarditis) or fluid in the sac around the heart (pericardial effusion)

Infection on or around the heart valves (infectious endocarditis)

Pulmonary hypertension

Ability of the heart to pump (for people with heart failure)

Source of a blood clot after a stroke or TIA

Contrast Used: Agitated Saline Injection

 Agitated saline solution administered via intravenous injection provides air microbubble contrast in the right heart. The air microbubbles are short-lived and diffuse into the lungs when traversing the pulmonary circulation. Therefore, the microbubbles enter the left heart only in the presence of a right to left intracardiac or extracardiac (pulmonary arteriovenous) shunt. Saline microbubbles are therefore helpful in examining the right heart and identifying shunts or holes in the heart.

2. Holter Monitor (24hr)

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A Holter monitor is a machine that continuously records the heart’s rhythms. The monitor is worn for 24 – 48 hours during normal activity. Electrodes (small conducting patches) are stuck onto your chest. These are attached by wires to a small recording monitor. You carry the Holter monitor in a pocket or pouch worn around your neck or waist. The monitor runs on batteries. While you wear the monitor, it records your heart’s electrical activity.

Holter monitoring is used to determine how the heart responds to normal activity. The monitor may also be used:

After a heart attack

To diagnose heart rhythm problems

When starting a new heart medicine

It may be used to diagnose:

Atrial fibrillation or flutter

Multifocal atrial tachycardia

Palpitations

Paroxysmal supraventricular tachycardia

Reasons for fainting

Slow heart rate (bradycardia)

Ventricular tachycardia


Like I said , I’ve had these tests before and I really wasn’t too worried about them.

Hell, the last time I even had a holter monitor on (back in 2005), I had to wear that baby for an entire month… in the middle of summer… in Florida… and you can’t get it wet… at all… even with sweat… So, 24 hours in Colorado – no problem. I’d say my symptoms were low-average on the day that I had the monitor on. I kept thinking to myself, of course, you’ll have a semi-good day for the first time in a long time BECAUSE you’re being monitored. I did have my usual tachycardia and dizziness, plus one episode of syncope, but nothing I would call spectacular or extraordinary, though. I did, however, have one very loving foster dog concerned about why I had wires and a box attached to me, so he was by my side non-stop throughout the entire day.

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Anyways, the next test was the echocardiogram. The saline contrast was definitively the most interesting part of the test- at least from a patient’s perspective. I was disappointed that they had me facing away from the screen when they actually injected it, but you can feel the bubbles as they move through the body and to your heart. Plus the second nurse was fun to watch, as she had no choice but to demonstrate good coordination skills when “swishing” the saline solution back and forth between the syringes, all while holding my IV catheter in at the same time since my veins refused to cooperate that day.

When the tests were done, I was told they’d be back in a few days and that the doctor would give me a call. Although, typically it’s the nurse who calls -not the doctor- but that’s beside the point. I went on my merry way and didn’t think twice about it again.

The next morning, as I’m still asleep from being up late due to sickness the night before, I see a missed call from the hospital and it shows that I have a voicemail. I press play and realize it was the cardiologist HIMSELF calling. Uh, oh… I immediately call back, but have to leave a message as he in currently in with patients. Well, crap!

Still, I didn’t expect the doctor to have found anything of significance anyways, so I let it go out of my mind and got started on the rest of my day. That afternoon, the nurse from the cardiologist’s office calls (I guess the doctor was still busy with patients) and says that the doctor wanted to make sure that someone called me with the echocardiogram results that had come in earlier that morning, although they were still waiting for the holter monitor results. She then tells me that the test showed that I didn’t have a hole in my heart, which is what was originally expected based on the previous cardiac results. Good, I think myself… another normal test.

For once, I don’t want abnormal tests – not when it comes to my heart, anyways.

Even more so because I watched my mother die from a heart attack at age 49.

But the nurse wasn’t done. Oh… She goes on to say that, unfortunately, it looks like there is still some pericardial effusion (which was also seen on the Feb 2014 test). More importantly, though, it looks like your heart is failing… *Excuse me, did you just say thatmy heart is failing?!?!* Well, your ejection fraction is less than 50% on the left side, which means your heart is pushing out less blood than it should be. The doctor wants to order a couple more tests if that’s okay.

*Of course it’s okay…

Am I really going to say no

directly after you just told me that

I’m going into heart failure.*

I’m connected over to the scheduling department at the main hospital to schedule an exercise stress test. They also have already started on the pre-authorization process for an MRI of my heart as well… with contrast. (Sadly, no bubbles this time around, just gadolinium). The hospital tells me that I’ll get a call soon, once my insurance approves the test, but the doctor wants this test done ASAP. I hang up the phone, in shock.

Did she really just say my heart is failing? I heard that correctly, right? 

I walk out to the deck and sat down quietly. The first thing I do, of course, is start Googling everything I can: “heart failure”, “low ejection fraction”, “heart failure, left side”, “low ejection left side” “causes of low ejection”…

Ejection-Fraction

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Just then, my husband walks out. He always has such good timing.

“What did the doctor have to say?

I pause for a moment, not sure what to tell him 

-or-  

if I can tell him at all…

Can I even say it out loud? I’m not sure.

“They need to order more tests because my heart isn’t pumping correctly, something about the left side and the ejection fraction.” 

I don’t want it to be a big deal, ya know.

At least not yet.

Not until I see the results and it’s all matter-of-fact.

“What did they order?”

“An exercise stress test and an MRI of my heart…”

My husband works in health insurance.

He knows how hard it is to get MRI’s approved because of the expense.

Typically, there has to be history and prior tests.

Unless there’s a legitimate reason the patients needs an MRI,

as opposed to other diagnostic tests.

“So what does this mean?”

“It means that my heart is failing…”

And with that, there’s nothing much more to say.

Of course, now I am worried. And starting to get scared. But what can I do but wait?  Besides, maybe it’s not that bad and they are just being cautious. It is the heart, after all. I try not to work myself up over it.

A few friends stop by that night and we act like everything is normal, because -ultimately-  it is relatively normal for me. I’ve lived with this condition for years, remember. Tests showed abnormalities 10 years ago.

10 YEARS! 

Plus, we’re still waiting for the holter monitor results. There’s no way they’ll come back any worse, especially when I wasn’t even that sick during the recording time.

But I was wrong, so very wrong… again.


To Be Continued…

Life’s a game made for everyone…


I struggled with this post, unsure how I wanted to approach it… but really,  I’m not sure exactly what to feel myself. I’m in a whirlwind of emotions right now. And I’ve started new medications, which are wreaking havoc on my body now as well. It’s like my world has sucked me into a whirlwind and spit me right back out again. And there’s so many questions left up in the air and so many more answers I am still searching for…

But it looks like we have several possible diagnoses


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i·ro·ny1
ˈīrənē/
noun
 
  1. the expression of one’s meaning by using language that normally signifies the opposite, typically for humorous or emphatic effect.
    ““Don’t go overboard with the gratitude,” he rejoined with heavy irony”
    synonyms: sarcasm, causticity, cynicism, mockery, satire,sardonicism

    “that note of irony in her voice”
       
    • a state of affairs or an event that seems deliberately contrary to what one expects and is often amusing as a result.
      plural noun: ironies
      “the irony is that I thought he could help me”
      synonyms: paradox, incongruity,incongruousness

      “the irony of the situation”

My post from May 31  is only more proof that living life with a chronic and undiagnosed illness is both a comedy and tragedy wrapped all in to one. 

Monday, after meeting with my immunologist/rheumatologist, I finally received a partial diagnosis and started on a new treatment plan. Sure enough, they say it’s Lupus, despite what previous blood tests have shown. Not only is it ironic that this comes one day after my post about NOT having Lupus, but May was Lupus Awareness month and I got my diagnosis on June 1. I dunno if it’s coincidence but life is really funny, I tell ya.

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They’ve run some more tests they sent out to a special lab that we are also waiting for further confirmations about the extent of autoimmunity I have. So far, based on general blood tests, the lupus does not seem to be affecting the majority of my organs, which is good news and gives me a lot more options as far as treatment goes. They honestly believe it’s a secondary condition that came out with all the crazy symptoms lately from all the stress on my body for being so sick for so long. We unfortunately have no answers as to what caused the anaphylaxis reactions at this point, but because I had three in a week, she’s put me on an aggressive treatment plan for my allergies to stop it before it gets any worse. Ultimately, without me ever mentioning my own personal thoughts, she drew the conclusion to dysautonomia being the primary source of my illness (which I have said behind closed doors for a long time now). She did get me a referral to neurology for the cognitive effects, which may or may not be Lupus related.

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Luckily, I was able to get in quickly with the neurologist and saw him on Wednesday. Again, of his own conclusions after working at the Cleveland Clinic prior, he says it sounds like P.O.T.S. as primary. He wants me to start Beta Blockers once the Lupus drugs and allergy meds have been adjusted, which makes sense because he wants to know what side-effects I am getting from the anti-malaria drugs before starting anything new. Plus I have already scheduled with the cardiologist, so he’d like to see what a tilt-table test will show before doing any radiology. However, none of the potential diagnoses explains the olfactory hallucinations, so he did order an EEG just to rule out possible seizures. I also have my first appointment with the vascular surgeon next week to discuss what the extent of the Nutcracker Syndrome is playing into all of this. 

Between the side-effects from the 12 medications I am taking daily now and all the stress of continued appointments, work, life…. I dunno how I am supposed to feel. Part of me is happy to FINALLY have progress and a name and something I can tell people… that they have probably heard of. I got my validation.  But then I feel silly and stupid for being happy of having an incurable disease.  Then the other part of me is sad because there isn’t a cure. But it is MANAGEABLE. But then I have so many questions still, and so many things are left up in the air. I feel SO CLOSE, yet SO FAR.  See my dilemma? I guess I need to be a patient-patient, but it’s hard. There’s been so many changes this week with work, school, and doctors that I need to update, but I spent about 6 hours in the bathroom today with side-effects and eventually had to go back to bed. I’m tired and worn, but I have hope.

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 I have so much to say, but no way to say it.  I’m almost numb at this point because it doesn’t seem real. And maybe it’s nothing that they say. Maybe it’s something completely different after the next round of testing comes through. But for now, it has a name.

Lupus.

Autoimmune.

Possible P.O.T.S.

Nutcracker Syndrome

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Feeling my way through the darkness
Guided by a beating heart
I can’t tell where the journey will end
But I know where to start

They tell me I’m too young to understand
They say I’m caught up in a dream
Well life will pass me by if I don’t open up my eyes
Well that’s fine by me

[2x]
So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don’t have any plans

Wish that I could stay forever this young
Not afraid to close my eyes
Life’s a game made for everyone
And love is the prize

[2x]
So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

Didn’t know I was lost
I didn’t know I was lost
I didn’t know I was lost
I didn’t know (didn’t know, didn’t know)