Thomas Edison, The Light Bulb...and Diabetes Insipidus

Earlier this week, I signed into chat on Facebook. Not something I usually do because I could spend, um, all day there. 

I saw one of my wonderful old friends from Davidson online, whom I just reconnected with last year through Facebook. We started chatting and ended up talking for a very long time. I was particularly low that night--feeling pretty defeated and frustrated.  But Patrick just kept giving me the gift of listening, validating, affirming, and encouraging. And the gift of time. 

While we were chatting we were talking about all of the trials of trying to find answers for my medical issues. He said to me, "What do they say about Thomas Edison?" I'm not so good at these trivia things. I said, "What?" "That it took him something like 8000 tries to create a working light bulb," Patrick replied.  Patrick's message was to keep trying, keep pursuing answers and one of these days we'll find the answers.

I needed that little boost, both from a friend and from the medical world.

And I got it at my appointment with a new endocrinologist on Friday. I'm starting to feel like I'm on try number 8000!

I had no idea what to expect, whether or not I would be taken seriously, or whether this doctor would even know anything about Diabetes Insipidus.

I could not have asked for a better trip from start to finish--except that I didn't get any sleep Thursday night! 

Clear weather.

Very little traffic.

Comfy pillows and blankets so that I could rest and recline.

Dad drove.

Mom gave directions and packed all of the breakfasts and lunches.

Abbie took care of Asher (I think he 'supervised' her taking down Christmas decorations). He's a very good supervisor!

I had new ear buds for my iPod, so that I could block out my parents talking and sleep! It's magical! :)

The appointment was ON TIME!

The doctor was attentive, had a great bedside manner, and knew all about Diabetes Insipidus.

I napped the whole way home.

So here's the inside scoop for those of you who want the medical scoop on things.

I brought with me the records from my ANS doctor explaining my illnesses and diagnoses of Autonomic Nervous System Dysfunction and Lyme Disease. I also brought the test results from my 2004 test for Diabetes Insipidus. 

Dr. Endocrinologist reviewed the records before he came in to meet with me. After reviewing my records and seeing the test results from the original water deprivation test I had done in 2004, he really felt that I DO have Diabetes Insipidus. We also discussed previous times in which I had done 24 hour urine catch measurements, and the amounts would place me in the category of a person with DI. I also discussed the volume output in short periods of time. Thankfully, I had collected a lot of data over the years that was useful for him to make a diagnosis on the first visit!

I wasn't sure whether or not the results would be of value or not, but I really did not want to have to repeat the test as it is very tough to do. It's a water deprivation test in which you go many hours without drinking any fluids, spend the day in the hospital, and they monitor your urine hourly to see how dilute it is. At the end they give you the hormone vasopressin (the anti-diuretic hormone) and see how you respond to it. They again check your urine to see how the hormone affects it.

We also just simply discussed how often I have to pee and how much output I have. As it turns out, I am on a very low dose of the anti-diuretic hormone (also called DDAVP or Desmopression in synthetic form). This means that we have a lot of room to increase and change my dosing so that I can have better quality of life and also manage my symptoms more. 

We still need to do the following:

--Get the results of other basic endocrine tests (which I did at the lab there) to check other possible causes of large urine output--such as diabetes mellitus ('sugar' diabetes) and thyroid problems.

--Do an MRI of my pituitary gland to make sure that there is not a tumor there (since the symptoms of DI have gotten worse over the years). Many times a cause of Diabetes Insipidus is never found (at least 30% of the time), so it is likely we will never know what caused this problem for me.

--Do a 24 hour urine catch. So much fun! Measure how much urine I put out in a day. Am I really typing this for everyone to read?! Yikes.

--Try taking the DDAVP three times a day (every eight hours) to see if that manages symptoms better

--Return visit in four months (but will hear about lab results and such before then). I really like this physician a lot, but he's an attending and I'm so afraid he will leave the hospital and I'll have to find someone new!

If I do, in fact, have DI then I will need to take the anti-diuretic hormone for the rest of my life. That's not such a super happy thought, but it is better to at least be managing the problem rather than not at this point! I will have to really monitor my sodium and potassium levels. I have a tendency for my sodium to go too low on the DDAVP, which is fairly common.

I'm still sort of in shock. I'm still not sure this is the right diagnosis. I've been trying to confirm it or find an alternate cause for so many years that I still am not sure what to believe. And we need to wait for the test results to come back. 

Since becoming ill, I've seen two other endocrinologists and four urologists. Most of the urologists just kept telling me, "Well, if you drink a lot you will have to pee a lot." Duh. But, I don't drink too much. I restrict my fluid intake even though I am always thirsty. In one of the records I found that my urologist (whom I had really thought respected me and took me seriously) said that my problem was psychological.  I'm still trying to figure out how you create urine output?! He also said that the cause was too much fluid intake and the solution was decreasing fluid intake. I wish it was that simple!

We, as patients, often question how many specialists we should see before we accept the answers we have been given, even if our gut tells us something more is going on. We are so often told that we are doctor shopping, malingering, or just seeking attention. I would give anything to be out living my life rather than spending it feeling sick and seeing doctors. But, I rely on the medical profession to play on my team and to help me find answers. I don't expect them to work miracles. I just expect them to be willing to give me a shot.

In some ways I wish that I had pushed harder for an answer and done so sooner when it comes to the issue of DI. But the reality is that I'm constantly fighting and battling, and it's just not always the same problem du jour. Sometimes more immediate crises take precedent, which is what happened after my 2005 gallbladder surgery. I also started to really just dismiss so many problems as 'just part of the Lyme and ANS' stuff. Not to mention that I have NO idea of what 'normal' is anymore. This is my normal.

In many ways, DI makes sense as a diagnosis. I've never slept through the night without waking up to pee, even as a little girl. This is not normal. I have never made it through a concert or a movie without having to pee. I used to run out at the end of classes at Davidson because I had to pee so badly. I can count on my hand how many times I've made it through a massage with Rebekah without having to get up to pee in the middle. I'm one of those people who always knows were a bathroom is and always knows how to get there before the line gets too long at intermission! In high school marching band, third quarter break was all about using that 15 minutes to pee.

I'm stronger now than I was when I first got sick. And I stand up for myself more. I've been forever changed by ONE comment from ONE doctor whom I saw at Hopkins in 2004. He was a geneticist and he said to me, "Listen to your body and never take no for an answer." I cried.

His words continue to inspire me to keep demanding answers and good medical care. Still it's often very difficult to keep pursuing answers and it's exhausting. 

I'm just so pleased with this appointment that we had on Friday. At the end I said to the doctor, "So I wasn't crazy to think this was what might be going on?" He said kindly, "No, you are not crazy." He was very knowledgeable and clearly had a very good grasp of DI--something that is so rare I wasn't sure how much he would know about it. Luckily, this particular hospital actually does testing for it every Tuesday, which means they must have a fairly significant number of people being seen and/or tested for it. It also helped that he had fantastic bedside manner and personality and treated me so respectfully the entire appointment. 

At my last PCP appointment, Dr. PCP said to me, "What are the chances you have DI, Lyme and ANS dysfunction? Pretty much not at all." Last night, my best friend said to me, "Did you tell her that means you have it then?!" I thought that was a good line, given my medical history.

Just the other day on NPR, right after Patrick and I chatted online, the commentator announced the anniversary of the date that Thomas Edison invented the light bulb. With all this talk about light bulbs, I can't help but hope this appointment was the beginning of a year filled with medical 'light bulb' moments just like this latest appointment. It was certainly a very good way to start off the new year medically!

Thank you to all of you who called, emailed and checked in with me on Facebook about my appointment! I think your good thoughts worked! I'm also incredibly grateful to Dr. Endocrinologist for taking me seriously, for being so focused on me during the appointment, and for being knowledgeable about DI.

Blessings,

Emily

I find spellcheck fascinating...it should be way more hip. Today it doesn't recognize iPod.

Photo:  Post trip slumber. Mom and Asher napping and catching some sun after our return home. He didn't let her nap for long though...he knows when it is time to get his dinner ready and he started staring at her like, "When are you going to get up and feed me?!" How does he have such a strong internal clock?