One More Test

I’ve been dreaming about quitting my day job as a disabled couch barnacle to be a more productive member of society again, go back to teaching or become an archaeologist, a scientist, or a jazz vibraphonist. Or all of the above.

But in the meantime, I’ve still got work to do. I’ve been writing about the saga of getting a firm diagnosis for likely Myasthenia Gravis for some time now and mentioned that I had another test last month at Stanford.

I had hoped to come home maybe with something definitive. A label to provide a tangible explanation.

But it didn’t happen.

I haven’t written about it because I needed to try to get my brain around it, try to logically work through the anger and frustration, so that I don't unleash it into the world. No one needs to see that. I was in a dark place last month and the holidays weren’t the real reason I took some time off from writing. I was seriously depressed. I’m doing a little better now but it waxes and wanes. It’s something I’ve battled my whole life and this strange ride through illness really amplifies it. Not even all the chocolate in the world can pull me out of it, but a little doesn’t hurt.

My husband and I made the long trek to Stanford so that I could do a Single Fiber EMG, an EMG that is specific to MG diagnosis. It wasn’t the test that disturbed me (more giant needles. Been there done that. Whatev). My doctor said that I couldn’t take Mestinon for 24 hours. I’ve mentioned before that I’ve been having a lot of difficulty with breathing, a common symptom of MG. More than anything, the Mestinon is helping this symptom. I’ve grown fond of breathing. I’m accustomed to it now. Please don’t take it away.

I had already cancelled this test once. It had to happen. I booked us a hotel for multiple days. I can no longer make the trip to Stanford in one day. The hospital is only about 2 hours away, but with Bay Area traffic, we often spend 6-7 hours in the car. Along with a few hours for an appointment, it’s just way too much for me now. Sadly, my body requires that I treat it like the delicate flower that it is. I needed extra days this time so I didn’t have to travel while coming off the Mestinon. I bought some oxygen designed for athletes. I packed some books, some movies, my shower chair, my wheelchair, and we said goodbye to our cats and headed out.

My husband is a master organizer and packer. All those years paying Tetris really paid off for him

I splurged a little on the hotel since we had to stay there a few days, and it was worth it. It was an adorable little hotel and each room had it’s own enclosed patio. They even gave us the handicapped room, though I think the only difference was that it had a shower chair. We ate over-priced, underwhelming take out, re-watched The Lord of the Rings, my husband slept all day, and as the Mestinon wore off, the breathing difficulty and weakness intensified. Yet, I didn’t have to do anything but sit in that hotel room, read, and hydrate. It wasn’t a vacation but it was definitely ideal.

On the day of test, I put on my finery (workout pants and a loose fitting sweater) and we headed to Stanford.

They called me in and told me to lie on the table. I had flashbacks to exactly a year earlier when I did autonomic testing and a regular EMG in the same room. I thought that EMG was a breeze. They warned me that this one would be more painful and take much longer. They weren’t kidding. The needle had to be placed deep in the muscle and held for 20-30 minutes for each reading. I had to slightly flex my ankle or leg so they could get a reading of how the muscle was responding. By the end, I was convinced I had sprained my ankle. Once they removed the needle, it snapped back. It was fine.

They told me to dress this way so I couldn't get my #hospitalglam on unfortunately

My doctor oversaw the test but it was a different doctor I had never met before who performed it. My doctor came in periodically, making jokes and being jovial as usual. When they finally finished, he read the results. “Slightly delayed but normal.”

 Everyone in the room turned to me and said “Aren’t you relieved?”

I was not. No. I was not. It didn’t matter what the results were. There’s no way that I can accept losing most of my mobility rapidly over a year as “normal.” Or waking up repeatedly in the middle of the night because I’m not breathing as “normal.” What I’m living is anything but “normal.”

Honestly, I wanted to scream. I had made a detailed list of my symptoms before the test since I hadn’t been able to talk to this doctor since May. I wanted to tell him about how much I have declined since then. How I can barely leave my couch or bed. I just wanted to be heard.

Someone in the background said “your next patient is here.” They wrapped everything up and my doctor started leaving. I asked him to wait and tried desperately to compose myself. I was angry and frustrated. I hadn’t gotten a chance to say anything. All those notes I made and I had to try to quickly condense it into a few seconds.

I work hard to maintain a calm, collected exterior in appointments and tests. This is important so you can communicate and to avoid that pesky label of being “overly-anxious.” I lost my cool. When my doctor looked at me, he must have seen it because he asked me, “are you going to punch me?”

I tried to explain the symptoms I was experiencing and my confusion. I had tested positive for the antibodies for Myasthenia (which aren't a false positive for anything else), I had the symptoms, and they were already treating me successfully for it. If it looks like a duck, quacks like a duck, isn’t it a duck? He explained he was hesitant to provide that diagnosis right now. He doesn’t want me to have to start taking a long-term steroid. I understand this, but I don’t understand why we can’t just put aside the song and dance and just finally label the darn thing. 

He said we should do the antibody test again and perhaps the results of that would change the diagnosis and mentioned I should do pulmonary function testing. The results of my antibody test showed that they have doubled. I should probably contact him to ask about it, but I haven’t. 

I knew better than to have such high expectations for one test. This was one test in years of endless testing. I forgot that this is a process. There are often no delineating lines between symptoms, testing, diagnosis, treatment. They overlap and intersect. But this one time, I just wanted something solid. Just this one time. For once.

I was in bad shape at the end of the test. I was off my medication for over 30 hours, had just been tortured, and was exhausted. Yet, I still deeply regret losing my cool. Often when you are doing testing and even during appointments sometimes, you are just a body in a room. Doctors talk about your body to each other in front of you. Motion to your presence. You sit there silently trying to absorb the medical babble to listen for something familiar or understandable. The process can be incredibly dehumanizing.

I don’t regret trying to make my voice heard. The physical and financial costs for me to get to that table were significant for my husband and I. I don’t get to see this doctor again until May. I can’t keep waiting. I can’t keep suffering with no answers and no response. I wanted to be heard. I wanted to maintain my humanity and give voice to the experience of this body.

Another disappointing test. I cried most of the way home. My husband keeps asking “why does a diagnose matter so much?” I wrote a post about it here, but there’s more. There’s something very material about a diagnosis that counterbalances the nebulous, invisible experience of illness. It’s an explanation, a satisfying answer for my broken body and spirit. It isn’t the end game, but it’s a means to move onto the next stage in the journey, open possibilities for treatment, and I could finally put the label on documentation.

So I came home and went back to my job being a couch barnacle. Maybe I’ll make employee of the month soon. I'm still waiting and waiting for some answer. Still dreaming and fighting for a better tomorrow still.

Next week I have another test, pulmonary functioning test. I hope that I can finally have some proof for my breathing difficulties, but I’m not holding my breath (see what I did there). One more test. Not the last surely. Not the end of this journey, with miles to go before I sleep.

Why Getting a Diagnosis Matters

I’ve been thinking a lot about why getting a diagnosis matters lately. Because many with Dysautonomia or other rarely diagnosed and invisible illnesses must go through months to years of appointments and testing to get a diagnosis, I have often wondered why we fight for one despite the constant obstacles and hurdles to obtain it. For many illnesses, especially rare and complicated ones, time to diagnosis is typically six years or more.

In 2011, I spent a year going through endless appointments and testing before I finally got diagnosed with POTS. I’ve spent most of the time since then going through endless appointments and testing to figure out what else is going wrong. Comorbities are common for Dysautonomia patients and they can spend years trying to obtain differential diagnoses. Never expect life to be easy, that's for sure!

I’ve mentioned before that about a year and a half ago I suddenly started having difficulty walking. I’ve gone from using a cane, to a walker, to now having to use my wheelchair if I leave house in that short amount of time. I am rarely able to leave the house at this point. Leaving the house is overrated anyway. Except, I miss it.

When I mentioned my walking issue to my doctor’s nurse practitioner when it started she basically told me I was imagining it. Invalidation all over again. So I tried to believe that for many months. But then I couldn’t get around and had to get a cane. I was continuing to lose my mobility rapidly. Hey, every 30 something goes through that difficult period of trying to figure out life while losing their mobility, right? Well, maybe not. I wasn't imagining this.

Having just one random illness no one has heard of is not a thing

I finally saw my neurologist this year. It had been two years between visits (the dude is popular and busy), and I told him what I was experiencing along with other disabling symptoms, he gave me a list of tests I would need to do. My heart sank. He was taking me more seriously but I knew all of those tests and appointments meant there would be no answers for at least another year. That was over seven months ago. I have only gotten progressively worse since then. My couch has a permanent Stefani shaped dent in it. 

While I fought to get the POTS diagnosis, I never dreamed of giving up. I'm in my fourth year of seeking a more complete diagnosis. The drive to give up has been surfacing from my subconscious, but that's not in my nature.

In one of the blood tests, I tested positive for an antibody for Myasthenia Gravis. Loss of mobility, weakness, difficulty breathing, and fatigue are signs of this autoimmune condition. In two weeks I do another test for MG. Maybe a diagnosis? My doctor had me start a medication last week that is used to treat this illness. But still, no official diagnosis. After all this time, will I finally know? But this led me to question why does a diagnosis matter? I am technically already being treated for this and have been learning how to cope with it, so why does the label matter?

Not many people want to be pigeon-holed and labeled. When you are desperately ill, that label is a like a trophy, engraved with the words "I Was Right!" Some never get a complete diagnosis and must suffer the costs of uncertainty long-term, but many of these patients still search for a label for their suffering. A label of an official diagnosis can matter for many reasons.

   Official Recognition and Documentation

Insurance companies and the medical system seem to operate in a very black and white world although there are some of us who live permanently in the grey area in between. There is nothing cut and dry about rare, complex conditions. Yet, a label and diagnosis fits into that tiny square in many medical forms titled “medical conditions" (good luck fitting more than one condition in that square). Having to list a grab bag of symptoms doesn’t seem to hold much weight in their world. Sometimes a grab bag of symptoms leads doctors or medical professionals to instead give a patient a psychiatric label such as “depressed” or “anxiety.” It’s easier than admitting they don’t know sometimes or investigating further. The irony is that depression and anxiety often are an effect of disabling symptoms met with invalidation, not the cause.

This is unfortunately incredibly common for many Dysautonomia patients. There can be serious ramifications from this invalidation. A lack of diagnosis could lead to patients not getting approved for a needed test or treatment option. It could mean a patient cannot get needed accommodations at work. It could impede accessibility to essential services for the chronically ill and disabled.

For those who are so disabled that they are unable to go to work or attend school, an official diagnosis could be a life line. This could help them qualify for disability or other types of assistance. For many, a diagnosis is essential for these practical concerns.

Often when you are chronically ill, you will encounter many doctors who do not know your medical history, you will have to fill out stacks of paperwork, and you will need to communicate to the medically uninitiated (such as employers, family members, etc) your needs. A diagnosis provides a concise explanation. 

Truth really is stranger than fiction. You can't make this stuff up. There’s nothing quite like having an entire Wikipedia page dedicated to your rare condition that you can direct them to when you have a diagnosis. The label leads to vital information and resources. It provides you with a prognosis and information to understand your body. A grab bag of symptoms rarely does. That leads to fruitless internet searches and typing into Google "am I dying?" The label can matter.

 

     Validation (Hey, I’m not just crazy!)

Finally leaving the inhospitable world of uncertainty behind for the more ordered, life-affirming nirvana of diagnosis gives patients validation, especially if they have been told they are wrong by many doctors. It lets patients at least take a break from the endless hamster wheel of diagnosis. This has practical financial, legal, and bureaucratic concerns as I mentioned above, but it also assuages the psyche of those who are desperately ill but have been denied proper care and treatment under the label of mental illness.

When I was finally diagnosed with POTS, I wanted to sing in the streets. Then I wanted to send the primary doctor I had who told me over and over “you’re just stressed” and ended up making me worse a flaming bag of dog poop. Ok, I won’t do that but I still think about it.

After being told by so many doctors that I was wrong, I was finally right. When you get a diagnosis, it's like reading a prequel to your life. The plot holes, disjointed timelines, and weird flashbacks of your story start to make sense.  I have learned that sometimes you will still encounter invalidation and continue to have to “prove” you are ill, yet you can wield a clinical diagnosis like a weapon against these forces. You aren’t wrong. You have proof. The label can matter. 

     Treatment

Perhaps most importantly, a diagnosis can lead to treatment options where there were none before. As with most rare conditions, no specific drug has been created to treat Dysautonomia and POTS as a whole, but there are drugs that treat symptoms such as Midodrine. Drugs are typically used off-label for Dysautonomia and POTS, such as Florinef (which was created for Addison’s Disease). The FDA did recently approve Droxidopa, an Orthostatic Hypotension drug.

It is difficult to treat a patient without a specific diagnosis, so finally getting that label gives a patient some options as opposed to few or none. Even with a probable diagnosis, you can have treatment options. For example, since my doctor suspects Myasthenia Gravis, I have started taking Mestonin and started physical therapy. Proper treatment can provide hope and can lead to a better quality of life. The label can matter.

 

 ***

HuffingtonPost posted an article listing other, innovative avenues for patients with complex conditions to pursue when you are trapped on the hamster wheel of diagnosis. POTS is even mentioned in the article, how about that! Depending on what happens over the next few months, I may pursue #3. 

I have been telling myself over the past year that perhaps a diagnosis doesn’t matter, but that’s the drive to give up talking. It does matter. The process to get there is painstaking to say the least but I have written before that there are ways to navigate it, which is here. 

Even if I also become one of those who must suffer a label-less existence, I know I'm not wrong, and that's what matters the most.

My last trip to Stanford Hospital. Keeping up the good fight

Why does getting a diagnosis matter or not matter to you?

Back to the Land of the Living and Results

Well, I went back to work this week. I made it. I did it. Even though I felt incredibly guilty about being on leave, I needed that rest and intervention. I wasn’t going to make it much longer and definitely not to the end of the semester. Going back to work, I felt embarrassed and awkward. With teaching, it’s important to maintain momentum and the connection with students. I was worried I was going to have to start from scratch. I even thought I’d jokingly suggest we all reintroduce ourselves when I walked back into my classes, but as I walked in one of my students shouted “Hey! You exceeded the maximum number of allowed absences on the syllabus and we were going to drop you from the course.” I told him luckily they don’t have that power. We all laughed. It was brilliant and put my fears to rest. I am still struggling with the constant exhaustion and weakness. Over these last few months my energy level has plummeted and I just feel worse overall. I really hope this isn’t a new normal. I'm also dealing with some intense family issues, but my plan is to get some rest and recover this summer and be bright, shiny, and new for fall.  But I’m doing better. My spirit is renewed. I’m ready to keep up the fight and finish the semester with my students.  I’m ready to start enjoying life again. Snuggle my cats, laugh with my husband, do some cartwheels when no one is looking.

A colleague asked me today if I was on leave because of “stress.” I had to hold my tongue and politely inform her that she was mistaken. Sometimes I have to remember to be patient with people because I don’t look sick so they can’t know that even though I show up to work most days,  I’ve spent the last 4 months suffering and being periodically bedridden and needing to go to the ER.  I’ll take it as a compliment that I make chronic illness look good. 

I just wanted to mention the results my neurologist’s nurse practitioner gave me at Stanford for the autonomic testing I did in December. Autonomic testing can confirm autonomic dysfunction, and it is one test that was actually created to diagnose dysautonomia. I was scared out of my mind to do these tests and put it off for over a year, mainly because I did not ever ever ever want to do another Tilt Table Test again. It’s enhanced interrogation, straight up torture. I finally relented. There are three parts to the test: the TTT, the QSART sweat test, and Valsalva Manuever breathing test. This video explains them and you get to watch someone be subjected to them: http://www.jove.com/video/2502/quantitative-autonomic-testing Try to stay awake through it. 

I walked into the testing room on the verge tears and told the neurologist and nurse I refused to do the TTT. The first TTT I did in 2012 was before I was diagnosed with POTS, and I had no expectation for the test. When they lifted the table up, my heart rate, which was attached to a monitor that beeped loudly, went from 72 to 147. I thought some alarm was going off as my heart rate was beeping wildly. The sensation of slowly being lifted to vertical made me want to vomit and pass out. I will never forget that awful sensation. Then, my cardiologist injected me with a medication to make it go higher to see if I would faint. The test proved my days of partaking in the joys of rollercoasters and tilt-a-whirls are over.

Luckily for this second one, they were kind, patient, and nice and they cut me a deal. Instead of the table lifting all the way up to 90 degrees for 30 minutes, they let me just do 60 degrees for 6 minutes. My heart rate wasn’t attached to a monitor and I wasn’t injected with anything. It was a breeze. A neurology TTT is much easier than a cardiology TTT. My heart rate still went from 72 to 147. At least I am consistent. The breathing test was the most difficult but they told me it was normal, which I wasn’t expecting because breathing is a struggle. They told me my sweat test was abnormal and explained that there is some nerve damage so my body doesn’t sweat properly. That’s great for living in an area where it is over 100 degrees for four months a year. They told me I should do more testing for this. I’m not sure what other information that would provide besides confirming I am a weird sweater. I guess I could just put “weird sweater” on my resume and call it a day.

Not the Bill Cosby kind of weird sweater

I also did a nerve conductivity EMG (http://en.wikipedia.org/wiki/Electromyography)to see if the new mystery of my weird walking problem is nerve damage. The test showed no nerve damage. The saga continues and will likely include more testing to figure this one out. I have heard these words mentioned in relation to this new mystery: MS, ALS, Parkinson’s. I’ve learned it isn’t worth panicking about any new possibility until it is a reality.

I’m not sure what the autonomic testing really provided and I don’t really understand the results, so I failed at explaining them to my other doctors. This is the problem with having a rare chronic illness: I often have to be the expert and the line of communication between doctors. I'm not sure what my degrees in literature really prepared me for, but they definitely didn't prepare me for that. I see my neurologist at Stanford at the end of May and I hope he can tell me more about why those tests were useful besides confirming I have POTS. 

I worried about doing those tests for over a year and it wasn’t nearly as bad as I expected. I should have learned a lesson there, but I still panic and stress about every test I have to do. There will be more tests in the future, but I will face them in my battle gear.