Hey there everyone,
So I'm (again) in a situation where I don't know what to do. I've been ill for four and a half years now, and they still don't know what's wrong with me. Some of you may have already read my story earlier, but I'll explain a short version. I have inflammation in my bowel, small and now since a few months it appeared in my large bowel. When they do colonscopy the biopt shows an abnormality but they don't know what it is. It's been on and off crohn's disease, but they just can't make up their minds. Well and I have loads of other symptoms, like exhaustion, muscle and joint pains, extreme muscle weakness, edema in my bowel and upper legs (weird place right?), skin lesions like some type of acne, I have too little tear production in my eyes, I feel sick/fevery all the time, headaches, mouth ulcers, well and the list goes on.
I went to see a rheumatologist (after like 10 other specialists) and he thought I had spondyloartrhritis, but thank god I don't have that. He started a story like ''the bowel isn't my area'' and the other symptoms are not clear enough for behcet's. But he said from the first moment I saw him the diagnosis is extremely hard, and my guess is he just doesn't know how to diagnose. (Because he said the bowel part didn't belong to behcet's?)
My bowel specialist says it could possibly be crohn's, so I got corticosteroids. They worked really well in the beginning, I got like all healthy and energetic. But then, when the dosis was reduced, I got sick again. So I am in remission again (sadly) and live my days lying on my couch. The dosis was brought back up again, but it doesn't help anymore. But now my doctor has a new problem: what now? She is not happy to give me prednisolon, because the diagnosis is not sure. She wants to do new research, but... I already had a 1297109273 tests.. I don't want another colonscopy, because it's gonna be the same thing all over again: ''we don't know what you have....''
Any advice? I'm just like all confused. I just want to be treated, I'm only 21 years old and my life has been on hold for more than four years now! What if I have a disease no one has yet? Do I just have to keep searching? That's like a terrible situation.... I'll be sick all the time, doctors wouldn't be giving me any medication and my life is just shitty. So do I take prednisolon , it works.. and what then? Still no diagnosis..