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Undiagnosed illness ruining my life :(
19/f in uk
For the past 3 years I've had an embarrassing problem- I have uncontrollable diarrhea, abdominal pain and fatigue at random times for weeks to months at a time. My GP tested me for a few illnesses with blood tests but nothing came out positive. She then told me I have chronic fatigue, IBS and depression. (I may have depression but I really don't think I have the other two as a few Rheumatologists I saw said I definitely do not have chronic fatigue.) After that my GP treated me like I was purposely exaggerating my symptoms whenever I went to see her, so I eventually stopped seeing her.
I've ended up missing a lot of school because of feeling sick so had to redo my last A-level year. I thought I would be sitting my exams this summer but I suddenly got a 39 degree fever during my first week of exams. It lasted for 4 weeks so I ended up in A&E and they sent me to a hospital ward. There they did every possible test imaginable from MRI, CT, PET, Xray and tonnes of blood tests but never actually found out anything specifically wrong with me. A few lymph nodes and gallbladder lit up on my PET scan but they werent sure why they were and I lost 5kg of weight because of nausea and bad appetite.
After being discharged I was sent to see some gastro doctors. They did more blood tests. I also recently had a gastroscopy and colonoscopy with biopsies (which were both surprisingly horrible as the sedation didn't knock me out at all). The biopsy results haven't come back yet but my insides appeared normal through the camera probes.
I now have to apply to uni (for the third time!) and try to finally sit my A-levels in December. I'm really worried I will never find out what's wrong with me and just be told to get on with it. I feel so abnormal because no-one else I know has had this sort of problem. My normal school friend mainly drifted away and the few I still am in contact with are always at uni and traveling. And because they can't find anything the doctors say there's nothing wrong with me. When I was 16 I felt so excited about my future but but now I feel like an old woman.
Sorry for the rant but could I please have any helpful advice I could try to stay afloat both mentally and physically? thanks
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Have you gone to see any American doctors. Sometimes they have procedures other countries don't offer but it sounds to me like you may Celiac Disease or Ulcerative Colitis or Irritable Bowel Syndrome, or Crohn’s disease. Parasites in the stomach like threadworm, tape worm, giardiasis can also cause these symptoms. Hence a stool test is a must. Problems of gall bladder and liver or that of pancreas too cannot be ignored.
I would strongly recommend you to see a gastroenterologist in the US.
I'm so sorry you are suffering this way but the next doctor you see demand that they listen to you and pay attention and not just dismiss you. They are paid to help not ignore. Call everyday, visit the office everyday, get 2nd, 3rd, 4th opinions because this is your life and you matter. Who cares if the doctors are annoyed by your persistance they are there to help and you make sure they do. Good luck sweetie. You don't deserve to live life this way.
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I can tell from your writing that you are not from the USA but either from someplace in Europe or Australia. The only problem I have with this is I am not aware of how the medical system works in regard to specialists and how you get to see them.
As I tell others just because you may have the same symptoms as someone else does not mean you have the same disease. That being said I saw a on a program called "Mystery Diagnoses" a women with the same systems a yours. It took years before she found a doctor in Northern New Jersey who was able to diagnose her. I don't remember the name of the disease. What I do remember is she was treated with an orphan drug. The disease was rare and incurable but could be controlled.
I'm sure this is not much help to you, though with a little research you might be able to get some answers. If you are your doctors contact the Discovery Channel Television Network in Silver Springs, Maryland, they may be able to identify the program from the information I provided and send you a copy of the program. From that you can get the name of the disease the doctor tested for and all the other pertinent information.
I hope this helps.
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I kind of am in the same situation and know what you mean by feeling "like an old woman". I was recently diagnosed with lupus which causes chronic fatigue and joint pain and frequent illness, and I am also almost starting the university (hopefully). We don't have the same symptoms, but since I live alone, I also sit at home a lot and do nothing. I can't even work. However, one thing that keeps me busy while I wait for appointments/lab results/tests/my fate (ha just kidding) is having lots of hobbies that I can do around the house (cooking, crafts, beauty blogging) as those are things I really enjoy but don't require tons of energy, as I can only do so much in one day. I know it's hard to see the light at the end of the tunnel, but just remember that once you are fully diagnosed, you can get treatment, and treatment means things going back to normal, or at least getting a definition of what normality is going to be, if it is a chronic disease like mine. Make sure you get out of the house, go walk around outside, keep seeing your friends, but let the closer ones know what's going on so that they understand. Like everyone always says, if they are a true friend, they will understand and care about you. It's unfortunate that this kind of things happens to us when we are this age, but we just gotta make the best out of it and wait it out, keep seeing docs and do endless amounts of tests/labs. Also, do as much online research as you can. You know your body better than any doctor does, and many times people self-diagnose better than doctors as well. Look up your symptoms in forums, etc, and look for people that describe the same thing you do. And remember, it's ok to be a little down sometimes. That's what sickness and stress does to you. Sometimes there are good days and sometimes there are bad ones, but as long as you keep pushing forward to get healthy, you will be fine. Good luck to ya!
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