Discussions By Condition: I cannot get a diagnosis.

Hepatitis C, traumatic brain injury, diabetes insipidus?

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: laurieishii
  • November 15, 2006
  • 02:58 AM

:( Eight years ago I was a heroin/cocaine IV user (I have now been off the dope for 5 years 8 months) and during that time I became suicidal and jumped off an 8 story building where I hit a tree before hitting the ground but landed on my head with a cracked skull where I received a craniotomy at Cedar Sinai. I had some brain damage (couldn't read or write for almost 3 years) and motor skills messed up, along with vertigo and slow comprehension and thinking process. But over the years I have gotten much of this all back.

Three years ago I got married and contracted Hepatitis C probably from my husband who had no idea that he had the virus but tested after we found out I had the virus and he had it. I had been tested every 6 months the 3 years prior to our marriage and tested negative.

Ever since the accident (and then two times after the 8 story I jumped 2 stories and broke and rebroke my back) I have had pain both in my head and back but bearable. I also had a very difficult time always having to go to the bathroom and incontinence. A year ago I started having such difficulty having to pee every five to ten minutes - if I drank water I would pee it out 5-10 minutes later, all clear, like water. Because I had not been regularly seeing a doctor for either my back pain or brain injury my new doctors didn't know my history. They said he couldn't understand why I had such urination problems and one joked that "either its nothing or maybe it's a brain tumor" and I aksed if I had mentioned that I had a craniotomy before and he immediately ordered an MRI.

Well because the techs were unable to find a vein (I used them all and it is always the biggest problem every time I go to the hospital) they were only able to do one half of the test. The part of the test they did showed that I did not have a 'bright spot' on my pituitary gland which may indicate that I have diabetes insipidus. So because it sounded like I had the symptoms the doctor gave me DDAVP and sent me to an Endocrinologist. I stated seeing the Endo and again because the lab techs couldn't find a vein (I usually have to get a femoral line - I used my neck up too) I didn't have some tests done. At first the Endo said maybe I had hypopituitarism because I was losing my pubic hair, underarm hair, eyebrows...but he wasn't sure and then my husband lost his job because of an injury and lost our medical insurance so I never had a chance to follow up.

I have just returned from another trip to the county hospital, where they admitted me for a day because I was dehydrated. Prior to that, I was at another county hospital that made me wait for 24 hours before I was seen and during the whole time I stayed in my husband and I's van which has a potty where I peed out everything in me till I could pee no more. They had taken my urinalysis hours (close to 12) ago and when they did see me they didn't know anything about diabetes insipidus except they gave me a prescription for DDAVP and referred me to an endocrinologist the next day.

When I was on my way to the Endo I got a hamburger, and halfway finished eating I started to get short of breath and it felt as if someone sat on my chest. By the time we got to the hospital my legs were numb and I could hardly waalk because I couldn't feel them. The Endo people snet me to the horrible ER from the day before where they again were unable to find a vein after sticking me about 6 times, including my neck twice and my groin once - where I then refused them to stick me again and left AMA.

The next morning, after still having chest pain and difficulty breathing I went to another ER and they admitted me. I didn't think I was having a heart problem, and I wasn't, but they said it could have been the fibromyalgia which I was diagnosed of over 10 years ago. I was also diagnosed with chronic fatigue syndrome a few years ago.

I got a flu shot before I was discharged from the hospital and got the flu the next day with a temerature 101.1 and have had a fever for four days now. I am now peeing dark urine, maybe because I am not drinking too much so I don't have to go to the bathroom every half hour all day including the whole night. Right now I have had extreme liver right quadrant pain, back pain and my body hurts all over. I am so sick of being sick all the time and never feeling well enough to do things normal people do. I am always EXTREMELY fatigued and weak. I think that some people think I'm a hypocondriac or something but believe me, I hate to feel this way and everytime I've thought that something was wrong with me, it proved to be so. I KNEW I had hepatitis c before I was diagnosed.

Sometimes I get dizzy and 'see' things as if I were on Esctacy or something - like hallucinations when I get dehydrated. My mind is mixed up and it's hard to concentrate, or even put thoughts together. I'm tired all the time and although usually I am a very outgoing, joyful person - the last couple weeks I have been so depressed because I feel like I'm going nuts because I am so sick of going to the hospital and I have so many problems that it's hard to focus on just one! I also forgot to mention that I have had almost constant (20 out of 30 days) migraine headaches in the last few months.

I am seeing an Endo on Nov.29th - what should I ask him to test me for? Or should I? I also have symptoms of kidney disease - but the symptoms for FMS, CFS, HepC and kidney disease are all pretty similar. Could someone please help me? I'd appreciate any kind of input. Thanks!

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5 Replies:

  • first... stop jumping off buildingsi have similar symptoms with the back pain and the vision thing. I also was an IV drug user but thankfully I still have my veins (hard to find, not impossible). i will watch to see if anyone has advice. HANG IN THERE!
    Anonymous 42789 Replies
    • November 15, 2006
    • 11:19 PM
    • 0
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  • Thanks...I'm done jumping off of buildings - it didn't seem to work anyway! Ha. I'm hanging in there - I got a flu shot the day I was being discharged from the hospital and I must have had an alergic reaction or something - my arm is swollen and it feels like someone PUNCHED me HARD in the arm and it's all red and bruised. I also got a fever and flu-like symptoms the day after I got the shot. Today I feel okay finally (a WEEK later) with no fever. I'll never get a flu shot again!
    laurieishii 1 Replies
    • November 17, 2006
    • 06:29 PM
    • 0
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  • Shouldnt have gotten swollen, may be an allergy there. But flu like symptoms after a flu shot are not uncommon. Thats why I stopped getting them. A shot to stop the flu by making you feel like you've got the flu....
    Anonymous 42789 Replies Flag this Response
  • i know someone who used to always get the flu after a flu shot.. ive never had one and wouldnt do. I didn't think I was having a heart problem, and I wasn't, but they said it could have been the fibromyalgia which I was diagnosed of over 10 years ago. I was also diagnosed with chronic fatigue syndrome a few years ago. air hunger is just another symptom of CFS, many of us get it. A very good and almost complete list of CFS symptoms is at http://wwcoco.com/cfids/bernesx.html thou i have quite a few more which hasnt made that list but are symptoms too of it. It never ceases to amaze me that many doctors often think ones with CFS only have a few symptoms which is so far from the truth. i guess you got tested for an bladder infection.... The dizziness and needing to drink a lot are part of CFS too or part of POTS (postural orthostatic tachycardia syndrome) to which possibly 40% of those with CFS have. POTS can be just another symptom of CFS and should be treated but unfortunately most doctors havent even heard of POTS. i have CFS and POTS and at times drink up to 7 litres (28 cups) per day and was needing to pee 5-6 times a night. Take care.. drinking too much WATER can be dangerous .. my doctor has me on sports drinks for the POTS.
    taniaaust1 2267 Replies Flag this Response
  • Wow, I just found out 3 days ago that I have Hep C. I wish I could offer advice but I'm hoping that maybe you can keep me updated! I've had multiple head traumas, was an IV user after the 240 dilaudid (which i was prescribed after breaking my back in '08) only lasted about 2 weeks along with the 100mcg Fentanyl patch.Then I resorted to other opiates as well. I too was diagnosed with Fibromyalgia but refuse to take Lyrica.I'm not sure that medication is the route. Plse keep me updated I will too.
    Anonymous 1 Replies
    • January 31, 2014
    • 01:23 PM
    • 0
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