Frustrated and Confused

Akikoj13

I apologize for this being long winded. I am frustrated and I think my poor doctors are getting as frustrated as I am at this point. I think maybe I am finally being thrown in the right direction but I honestly don't know. I freaked a bit when this first started, but my symptoms were much less managed at that point as well so I wasn't exactly myself at that point either.

I am a 30 year old female although I was 29 when this started, Happy Birthday to me lol

I have never been one to have headaches or anything. I woke up May 19th with the worst blinding, painful, nauseating headache imaginable. Figured oh well I had a lot of blood drawn the day before thats probably the problem. Drugged myself to sleep the rest of the day and was ok by the next night. Fast forward exactly 1 week later same thing happens. Somehow manage to get it under control and call my doctor. Mind you up until this point aside from breaking my back twice and the fact that I am overweight I have always been pretty healthy. She gets extremely concerned and tells me since she is unable to see me that day to go Prompt Care or the local ED. I take her advice and by Monday I am staying in the hospital due to my now High Blood Pressure that doesn't want to be controlled and my pounding head amongst other things. 4 days later I finally get to go home minus most of the headache, with the blood pressure controlled but not feeling much better otherwise. Over the course of all of this I had been (and still am) extremely light headed which comes and goes, constantly nauseous and just plain exhausted but unable to sleep. I quite literally aside from about 4 hours spent those 4 days staring at a wall.
During that stay I developed diarrhea that has not gone away and continue to pee like it's not tomorrow. No fever never has been despite the fact that I feel hot sometimes. Most of the time though I am ok or cold.

By the next week I felt worse despite the fact that I was drinking more than enough water even though I wasn't eating. When I went in to see my Gastroenterologist she noticed that I was not myself and after seeing my heart rate (160) and checking my labs sent me to the ER for severe dehydration where they kept me and I stayed for another 4 day stay. This time my symptoms were gotten actually under control and they made me eat before I left. I am now trying to be more vigilant about watching for dehydration, I felt so bad that week that I honestly didn't notice. My GI also has me drink just Gatorade to replace all the electrolytes I have been losing and so far it is working just enough to keep me home.

I am finally eating in small amounts but can tolerate almost no solids or within a matter of hours its unbearable pain and diarrhea. If I stick to liquids I have noticed I tend to be ok. Less pain and no diarrhea. I went about 10 days with an average of 2 hours of sleep per night (since I came home from my second hospital stay). I was at Prompt Care last night for my head and the doctor there wasn't surprised. The way he put it was with the amount of pain I am trying to override he wasn't surprised I am not sleeping.

My primary sent me to Urology for blood showing up in my urine which has seemed to disappear now and I was basically told I was not their problem. I see Neurology next week and have now been referred to Hepatology.

My Gastroenterologist while trying to figure out my issues from a GI standpoint has been doing everything she can including checking my labs and has been keeping an eye on my counts and liver enzymes in the process along with my primary who is out this week. Over the last two weeks that they have been watching my enzymes my ALT has jumped from 68 to 181 and my AST from where is was hovering at 44 to 70. Where as my normals are usually around ALT of about 31 and AST of about 16 (from my labs about a year ago). The highest levels were current as of Monday.

My Red and White counts have also been consistently high for the entire three weeks. So far I have tested negative for every infection they have tested for, I have had an antibiotic and I am negative for Hepatitis.

I have also been having issues with my hands and feet going numb and now right side and back pain that has been getting pretty intense when it does happen.

I just wish they could figure this out so that maybe I could go back to having a life. Right now I am so miserable and exhausted I don't see much of anyone or anything besides my bed and the bathroom. Any words of wisdom are greatly appreciated.

Akiko