June 6-September 12, 2009

So.... I'm starting a blog, because i feel alone. 3 months ago, I was visiting my husband in MS while he was on active duty in the AF. We went out drinking, came back to our hotel, and went to bed. During the middle of the night, my husband found me unconscious and bleeding from the back of my head.

I pushed all my bad feelings aside and continued to have fun for the weekend. I felt tired, nauseous, dizzy, and had a horrible headache. I didn't want to ruin the weekend, so i pretended i was fine. The flight back to NY was awful. My head felt like it was going to explode.

I wanted to go to work the next day, but i had such a hard time waking up and felt so horrible that i went to my dr instead. She examined me, did an xray and a CT, and concluded that i had a concussion, but there was no other damage.

I decided to go to work the next day even though i felt awful. The headache, nausea, unsteadiness, and exhaustion wouldn't cease. Halfway through the day a started vomiting and could barely focus on anything. I drove home and called my doctor.

She referred me to a neurologist, who was able to see me immediately. He prescribed me a sleeping pill to help out at night, and a few migraine samples to fight the migraines. He said if the symptoms didn't improve, he would send me for an MRI. 2 weeks later I saw him again. No improvement. I was tired all day, headaches, nausea, and dizziness. All of those symptoms would get worse if i did anything. He ordered an MRI that i would have to wait a week for.

I went to get the MRI, and saw the neurologist a few days later. The MRI was negative. I wasn't anxious to have something, but something was better than the unknown in my head! I wanted to scream. I didn't understand how i could feel legitimate symptoms if there was nothing wrong with me that would be picked up on any test.

I had some blood drawn by my MD and she also ordered an xray of my neck, because i also have tightness and cramping in my neck. The xray was negative, and the blood test showed a vitamin D deficiency which could be fixed with some prescription vitamin D pills. No big deal. She also said that we should repeat the test because there must have been a mistake in my billirubin levels.

I saw the neurologist every 2 weeks and continued to stay home from work. My husband came home from MS, and life became both easier and harder at the same time. I wanted to be with him and go out with him and enjoy the life i always have, but i was so limited! My head hurt and i was so tired all the time. There was very little i could do before i would go into overload.

My husband came to the neurologist with me and began to understand that what was going on was real. He didn't really get it until then. Every 2 weeks my neurologist would switch up my meds trying different things for my symptoms, but always saying that nothing was going to heal the concussion, just help my symptoms. Nothing helped my symptoms either.

The Treximet works for my migraines, but makes me feel like i'm having a heart attack. I've gotten used to feeling like i'm having a heart attack.

Four days before my 29th birthday, on July 25th, my left leg was numb. Not exactly numb- heavy, i couldn't use it. My leg would buckle when i tried to walk. I didn't think it was that big a deal. Maybe it was a side effect from the meds i was on. It felt like someone was squeezing my leg or something- heavy with a lot of pressure, tingling, weird. I couldn't describe it. I went to bed thinking it would go away.

I woke up in the morning with total craziness. I still couldn't move my leg, and it was worse. My arm started feeling heavy and tingly. I was also feeling very unfocused and confused. I called my MD and she said "Get to Gates". She thought i was having a stroke.

I got to the hospital, and they started all types of tests. MRI, CT, CT with contrast. Nothing was showing anything. They were all confused. They didn't have any beds, so i was turfed to the "observation room". My husband left to take care of the kids and get some sleep.

In the middle of the night, i began having trouble breathing. It wasn't that i couldn't take a breath. I just had to make my self breathe. It wasn't happening automatically like it normally does. I had to physically take breaths in and out. I was making my self breathe all through the night. No one understood what i was saying and i was becoming very tired from it.

I had a chest xray and it was negative. I began to become very distressed because it was so hard to keep myself breathing. I was so tired, but if i fell asleep i would stop breathing. Every time i fell asleep, my husband would wake me up, because my monitors would show that i wasn't breathing.

The doctors didn't really get what was going on until they saw me fall asleep, and let me stay asleep without waking me up. I didn't start breathing on my own when i fell asleep and my O-sats dropped into the 40s. When they finally woke me, I began speaking in gibberish. I couldn't say what i wanted to say. It was so scary.

They did a blood gas- ouch (an understatement) and it was negative. They finally began to see what was going on. It wasn't a breathing problem, but what was it. They put me in the ICU for monitoring and the condition did not improve.

I was taken for an EEG, which was negative, but during that time, i felt new symptoms on my right side. My right wrist felt like someone was bending it back. I wanted to sleep so badly but was being forced to stay awake because i had to be taken off the monitors for the test.

That night, the new nurse wanted to turf me to the telometry floor. She was trying to get me out of the ICU and into a room. There were several episodes of me falling asleep and waking up speeking giberish. It happened 4 times, and was scary every time.

Several times that day my husband and I felt as if we needed to say goodbye to each other. We prayed, held hands, and just cried. The night nurse finally moved me out of the ICU, against the attendings orders and put me onto the telometry floor. My night nurse looked like Florence Nightengale. She must have been in her late 60s and would not have been able to do anything for me in an emergency. She was smart and experienced, but slow and frail. My husband stayed the night.

The night went without episode, but also without sleep. I couldn't let myself fall asleep because i was scared that i wouldn't wake up. I didn't feel as if i was in good hands. The following morning, i was greeted by a new nurse and a new situation. I still couldn't breathe on my own and my leg was still numb. My arm was not too bad, but i was worried more about other things.

My billirubin levels were 8.7, which is more than halfway to dangerous. The attending was very upset that i was taken out of the ICU, but was conceeding that it would be ok. Every specialist in the hospital saw me, and no answers were given. I was vomiting and nauseous and felt a tremendous amount of pressure in my digestive system. I was feeling hungry, but eating made me sick. I was turning yellow in my eyes and my skin.

I was put on a saline IV and in several hours, things began to change. I was able to sleep for longer periods without losing oxygen in my blood. I would wake up only every 10-15 minutes instead of every minute. I was getting a few minutes of sleep here and there and was beginning to feel more confident. That night, i was able to sleep for even longer stretches of time. 30 minutes at the longest, but it was fantastic!

When i woke up in the morning, i was able to move my leg more. I had much more strength and mobility and was feeling better. I was taken for an ultrasound on my belly and an xray of my hip, because that was the only spot that still felt weird on my leg. My breathing was almost all the way better.

All the tests came out negative, all the specialists signed off on me, and the following day, i was released. The attending wanted me to follow up with someone to check out my billirubin issue and my MD and my neurologist. He didn't want me to leave without figuring out what happened, but there was no medical reason to keep me any longer.

I saw my neurologist again, and he didn't have any explanation either for what had happened. I didn't follow up with my MD until she could see me about 3 weeks later.

She said there was a disease called Gilbert's disease that causes your liver to not process billirubin well, so that the indirect billirubin will always be high. Stressful situations will cause the liver to function worse, and the indirect billirubin will rise very high. It isn't dangerous and can be lived with easily.

As far as my numbness and breathing was concerned, she seemed to think that it was the initial onset of MS. She said that legions wouldn't show up on the brain initially, and that my spine would have to be tested to show any signs of that. There was never any testing on my spine or mention of MS while i was in the hospital. She said that there would be no way to make a diagnosis unless i had another set of symptoms or some sort of consistency.

Since the hospital, i have had some instances of weird feelings in my body: tingling, pins and needles, numbness, heaviness. It hasn't been anything like what it was in the hospital, but scary anyway. I may be overthinking things or looking for symptoms.

I continue to see my neurologist regularly and will have more bloodwork done to ck my billirubin levels. I am blogging daily to try and record how i feel every day.

Maybe i will see a pattern? Maybe i can feel better by getting this all off my chest?