The Long Road to a Diagnosis

Fall of 2011 was the beginning of my college carrier. Little did I know that it was also the beginning of my health problems. Barely into my first semester, I was pouring over my books one evening when I realized that my hands were shaking like crazy. I had no clue what was going on with me, but I did know that no matter what it was I had some meetings I had to attend. By the time I went to my first meeting my whole body was shaking as if I had a very high fever. I was very cold, my cheeks were burning and red, and I felt horrid.

My sister asked our Prayer group leader what we should do and they took me to the dorm nurse. The nurse took my temperature and it was fine. After putting me to bed, the nurse asked if I had blood sugar problems. My sister told her “no” and the nurse told me to drink some juice and go to bed.

That was just the beginning of everything! Throughout that first semester I had occasions off and on where I was a little shaky but none where as bad as that first time and I sloughed them off as no big deal. Then, over Christmas break things got worse.

My second semester of college is when I finally had to tell my parents.  I should have told my parents earlier, but I still wanted to believe that nothing was going wrong. My symptoms included : tremors, lightheadedness, fatigue, blurred vision,  extreme thirst, excessive urination, slight headaches, almost passing out a couple of times, flushing of the face, extremely dry skin,  foggy brain, occasionally even slurred speech, and by midsummer tears where non-existent half the time. 

Several of my friends observed what was going on and asked if it was low blood sugar. This got me to wondering. So, I purchased a glucose monitor and decided I would see for myself. The first time I checked it I was at 75, but I was having all the symptoms of hypoglycemia.

One day, I was sitting in a noon class and my hands started shaking, I started feeling awful, and got very anxious. During that class period, all that I could think about was getting out of that room and somewhere to get something to eat. When food did not help I went to a friend’s office who had Type 1 Diabetes. She gave me something to try to get my blood sugar up. When the shaking finally wore down enough that I could check, the glucose monitor said that I should have been fine. However, that whole afternoon was awful!  What was going on?? That was the incident that scared me into telling my parents what was going on.

My parents got a doctor’s visit for me and of course the first thing the doctor checked for was Diabetes Mellitus. When that test came back perfectly normal, my doctor referred me to an endocrinologist and got an appointment set for not long after school got out. Summer finally came after what seemed like an eternity. My first Endocrinologist visit ended with the doctor ordering a whole battery of tests done to check for hypoglycemia and a myriad of other things that might be causing the symptoms.  After most of the tests came back perfectly normal, I was distraught, but there was one more test that the endocrinologist wanted to do to check for sure that my glucose levels were okay.

A couple of days after the final test I needed to get alone, as I had several times before, to just talk things over with the Lord. I went to a spot that was secluded and just poured my heart out to the Lord. I asked him what his purpose was in all this. I remember asking the Lord over and over again why he could not have just given me diabetes because at least that would have been easy to diagnose and could have been treated.

I knew that if I did have diabetes that I would live with it the rest of my life. However, in my mind having something diagnosed that could be treated would be better than living with something that no one could figure out and could not be treated. I begged him to let the endocrinologist find something.

As I poured my heart out to the Lord, I cried and no tears would fall. It was awkward crying without the relief of tears flowing down the cheeks. I remember saying to the Lord “Lord, I need relief from crying! Why won’t you just let me cry? Why will tears not fall? Why can’t I cry? “ My conversation that day with the Lord started out rather angry but ended on a slightly better note. I thanked God for what he was doing and asked that somehow, someway He would just use this all for His glory and for my good. I begged him to draw me closer to his side through this whole thing and again I asked him to please help the doctors to find the problem.

That same day I went home and got on the computer to try out a symptom checker. I plugged in my symptoms, as I had done several times before, but this time along with all the normal stuff that always came up was something I had never heard of before. Something called Diabetes Insipidus. After checking it out, everything seemed to match up!

After measuring my water intake, I found out that I was drinking 3.5+ gallons of water and was going to the restroom over 24 times within a 24 hour time frame. My mom told me that I needed to ask the doctor about DI at the appointment and needed to tell him what I found out about my water intake and output.

The day came to go back to the endocrinologist, he seemed very determined that there was nothing wrong with me and showed us that my insulin levels were perfectly normal. I was fine in his eyes, and there was no need to go any further.  While at the follow up visit my mom had me tell the doctor everything that I had found out.  The endocrinologist restlessly listened to what I had to say. He acted like he did not believe me at all. And when we asked him about Diabtetes Insipidus he was not very pleased and did not seem to think that that was the problem. But my mom convinced him to check it out. At first he said that the only way to see if I had it or not was to go through a water deprivation test and to do that I would have to go to the hospital. But then he excused himself from the room and came back with a paper of different tests that he wanted run. He wanted them done as soon as possible.

We decided we would do the test on Friday morning. I was not supposed to drink anything from 10 in the evening till after the test- that was awful!!!! We went in to the lab Friday and I had the test done.  Just a few hours later the endocrinologist called back and told us that I was unable to concentrate my urine (no, huge surprise here). He then proceeded to tell us that I needed to have the water deprivation test as soon as possible. Basically to verify that I had DI and to determine what type I had and how to treat it. So my test was then scheduled for the following Monday. The doctor did tell us that it would not be a pleasant test and would be risky.

 

The night before the test I challenged the Lord. I told him that if the test results came back normal I would hate him forever! Well, the test came and went and the results came back normal. I was very angry at the Lord!!! However, the Lord did not allow that very long.

 It was the week of VBS at our small little church and they needed help with all the kids. So, I went to help out. That week between listening to the children quoting Bible verses and watching souls come to Christ, God got a hold of my heart and showed me that He had a reason for what he was doing. After that I began to read more in my Bible and God began to do a work in my heart. I began to realize that God had a purpose for what He was doing even if I could not see it at this point. I would like to say that after this point I never doubted that God’s way was perfect but that would not be the truth. I still had my ups and downs, but God always brought me back and showed me that He was with me – in fact this was one of those times when he was carrying me.

Anyway, it wasn’t long and we were back in my family physicians office, pretty much back where we had started. This time, my doctor wanted to send me to a Christian counselor, he said that there did not appear to be anything wrong with me physically and that sometimes the symptoms that I was having could be caused by a spiritual problem. Well, my parents were not too happy about that, and pushed to get my doctor to send a referral to another endocrinologist. My parents were confident that it was not all in my head. Although, I have to say by this point I really did not know, and was even test shy because all the tests were coming back normal. I was afraid that we would go to this new endocrinologist and get the same response that we did everywhere else.

But we did not. The new endocrinologist agreed to do another water deprivation test. He also ordered a 24 hour urine sample, a lot of blood work, a MRI, and a scan of my kidneys and bladder. I filled two and a half of the big jugs that they give you to collect your urine in and completely shocked the people at the lab. They had never seen anyone come in with that many filled in a 24 hour period (normally a person will not even completely fill one).

The time came for the water deprivation test. That was a hard day, but God was good and I was at peace the whole time. At the end of the test they injected DDAVP and even thought that whole day had been awful after the DDAVP kicked in and I got a little bit of water I felt better than I had felt in a long time!

The day after the water deprivation test, we had an appointment with a Nephrologist and with my Endocrinologist. The Nephrologist said that I did not have Nephrogenic Diabetes Insipidus and that the results seemed to indicate that I was okay. When we went to see my Endocrinologist he said that the results did come back basically normal, so far, but that he would go ahead and let me try DDAVP and see if that helped (at this point all the blood work from the water deprivation test where not in).

A couple weeks later we got the results back from the test. The results were right on the border line, and it was debatable by looking at the test results whether I had Diabetes Insipidus or not. But after several months of being on DDAVP and it helping tremendously, the diagnosis of Diabetes Insipidus was finally given.