Discussions By Condition: I cannot get a diagnosis.

adult malrotation of intestines does not cover all my symptoms

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Anonymous
  • January 27, 2009
  • 11:28 PM

Sorry this is really long I am just so frustrated and constantly scared another attach of stomach pain will hit me!
My entire life I have had stomach problems and more. I missed a lot of school and was in and out of the doctor's office, although once I was off of my parent health insurance I rarely ever went; until now.
I recently went to the doctors because one of the problems I have been having my entire life is getting more frequent and more sever. I get sever abdominal pains that I believe are in the lower abdomen but cannot exactly be sure because when I come out of the pain all I really remember is the pain. My boyfriend always tries to get me to go to the hospital when I get them but I cannot afford it and I know that I always get better and it is just a matter of time before the pain stops. It gets so bad that I writhe in pain and moan. I can get fevers of around 103 which my body temp usually reads 96.7. My skin gets even paler that it normally is and my veins are highly visible. Even though my boyfriends say that I am burning up I feel like someone had thrown me out in the snow and I shake uncontrollably and breathe very heavily. Sometimes this is all accompanied by nausea and diarrhea but most often with constipation. Lately it has seemed to come more frequently. I used to get it once every 1-2 months or so but this last month I got it 3 time.
There had never been a correlation with my menstrual cycle and never has it had a pattern. I thought maybe it was dairy but I still got it once that was cut out, nothing has seemed to work.
When I was a baby my mother said that I was very colicky all the time but the doctors said that some babies are like that. When I was 1 yrs old I had an unexplained seizure, I stopped breathing and had turned blue, they never figured out what caused it, again the doctors said that some children get them at this age.
All through elementary school I was in and out of the doctors for sever coughs and upper respiratory infections later the doctor said that I actually have asthmatic bronchitis. I also had and still have eyes that are very sensitive to light, the eye doctor my mother brought me to at age 8 said that I just had enlarged pupils and that I would eventually grow out of it. I cannot wear any type of sunglasses that always make me feel very dizzy. When I was 10 I had a haltergram test for my heart because i would have intermittent chest pain that got worse when I breathed in. I still get this every once in a while but it usually last only about a minute
I have been very sensitive to the sun all of my life if I am out in the sun too much I get very rundown and fatigued feeling with nausea and headaches. To this day I work the night shift in order to stay out of the sun as much as possible. My arms legs and back hurt all of the time it feels like a deep ache, it usually feels like my joints and other times it feels like I am having growing pains all over again. Occasionally my hands will tingle very similar to the feeling of when it "falls asleep". My right shoulder and hip occasionally can pop out of socket and my fingers have crazy range of motion.
At age 18 I was diagnosed with polycystic ovarian syndrome and put on oral contraceptives I stopped taking them about 1 year ago. My periods are pretty regular but are still accompanied by very large mood swings and bad cramps.
I sometimes struggle with extreme mood swings and forget what i was saying in the middle of a sentence. I am very well known for putting things in safe places and then never remembering where that was.
Now for the results from the doctor, I have never been in when I am having symptoms.
-Blood tests done came back negative for lupus and Lyme disease with no abnormalities
-Urinalysis came back normal.
-24 hour urine collection was dropped off yesterday and I am still waiting for the results.
-This is the odd thing, the abdominal pelvic CT scan: "Lung bases are clear. The liver, gallbladder, pancreas, adrenal glands, kidneys and spleen are normal. Incidental note is made of a splenule. Abdominal aorta is normal in caliber and pattern of contrast enhancement without intimal flap. Retroverted uterus is identified. Right ovary is associated with a 2cm simple cyst. Left ovary and urinary bladder are intact. Soft tissues and bones are normal. Moderately enlarged lymph nodes are scattered throughout the mesentery (largest measures 1cm) The small intestine occupies the right side of the abdomen and the large intestine occupies the left side of the abdomen. There does not appear to be normal position of the ligament of Treitz and the superior mesenteric artery-superior mesenteric vein relationship is reversed. (This may represent congenital malrotation of the intestines or a large right internal hernia)" This was the results report given to me by the doctor.
The doctor says that congenital malrotation of the intestines or a large right internal hernia may explain the abdominal pain but not the other symptoms. He said that I have "funky intestines...never seen before" What is causing my other pain, why are my eyes so sensitive to light and why does the sun make me feel sick. My family nicknamed me "the vampire of the family" and all I want to do is be able to swim in their pool IN THE SUN!!!
What the heck is going on with me?

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8 Replies:

  • How did I know that you were going to be one of the first to reply? Any other thoughts other than antennas and cell phones and cordless phones... Though I have a question for you... if you really believe about cordless phone, cell phones and antennas...how come you spend so much time on the computer? I know you spend a lot of time sitting at the computer because it always seems you have something to say on everyones thread I bet you have wireless internet. I was just wondering that. Do you get paid to tell everyone how bad everything is because you almost sound like an infomercial.Anyways I really did not mean to sound rude. I really am just wondering, usually normal people do not sit around on the computer practically posting to everyone elses concerns that it is all caused by the same thing I just find it hard to believe that someone could honestly believe that every illness is caused by the same thing as you seem to because every thread i have ever read has you commenting the same stuff.
    Anonymous 42789 Replies
    • January 28, 2009
    • 01:44 AM
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  • This is just an idea and I am not a doctor but have you been tested for any of the various forms for Xeroderma pigmentosa. Best of luck
    chrismia 159 Replies
    • January 28, 2009
    • 03:53 PM
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  • I don't think that I have been tested for that. I have never heard of it. Thank you for the help.
    Anonymous 42789 Replies
    • January 28, 2009
    • 08:25 PM
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  • Well I was looking up Xeroderma pigmentosa and I don't think that I have that, I have had only a mild sunburn and I can count the number of times on my hand. Never any blistering due to sun exposure in fact the times I have had prolonged exposer to the sun with or without sunscreen I got maybe a little pink but that would go away in hours. That fact always amazed my family because I have a very fair skin tone. If I am in the sun I get a really golden tan that my sister would always be envious about. Sun exposure just makes me sick. I get no skin symptoms what-so-ever. 20 minutes in the sun for me means I will get bad headaches nausea and can sleep for long periods of times, it feels like I crash sometimes sleeping 18hrs at a time even if Ihad a full nights sleep the night before.
    Anonymous 42789 Replies
    • January 28, 2009
    • 08:40 PM
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  • Blaze:I read your link and didn't find anything of relevance there.When are you going to get it that people are sick and tired of your B.S.?
    richard wayne2b 1232 Replies
    • January 29, 2009
    • 03:58 PM
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  • What you have is called photophobia.It can be caused by magnesium deficiency.You can research the other causes to see if anything fits.
    richard wayne2b 1232 Replies
    • January 29, 2009
    • 04:08 PM
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  • Hypermobile joints (crazy range of motion) make me think of Ehlers-Danlos syndrome. PCOS together with hip joints that "pop out of place" make me think of Turner syndrome. I think you should ask to see a geneticist.
    aquila 1263 Replies
    • January 29, 2009
    • 04:56 PM
    • 0
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  • you sound like me.... i have fibromyalgia. wide spread pain/achey... with the migraines. with hypoglycemia, insomnia, restless leg syndrome, irritable bowel with horrible constipation..... bad mood swings because something just doesnt seem right... oh yeah and yes malrotation of the intestines (had surgery just 2 wks ago on oct1st 2010) so i your instestines have struggles you entire life to absorb nutrients, wouldnt you organs be deprived in some way? yes every cell in your body would become exaushted over time.... yes i have very low iron but not enough to be called anemic. and i am pale like a porcelain doll baby.... nobody else in family is so pale. so they did the surgery and yes i can acutally have bowel movements naturally.... one day at a time.... went to work today to turn in doc's notes... everyone said wow you look great, your skin is glowing. i have 2 more wks to recover but i feel great. my body was not absorbing what it needed to function no mater what i ate or what supplements i took. everything was starving for oxygen and nutrients... surgery to correct my intestines is the best decision i have ever made... you have to see pediac surgeon becuase they are more familiar with malrotation. nobody really knows how much you are suffering and trying so hard just to get thru the day. 800mg ibuprofen, celexa once a day, flexeril once a day and prevacid .....these are the only drugs that work for me at this time... and yes they make a huge difference.
    Anonymous 42789 Replies
    • October 14, 2010
    • 06:35 PM
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