System failure? Autoimmune?

Hey everyone, I really need some advice because I’m losing my mind trying to make sense of all this. Where do I even start? Okay, so here's the deal. I'm 23. I don't drink, I don't smoke, and I don't do drugs. 🙂 The last two years have been my own personal hell—something I wouldn't wish on anyone (not like there's a choice, right?). It all started back in the fall of 2006 when out of nowhere, my adductor muscles just gave out. Like, literally, I stood up from a chair and felt this sharp pain in my groin. It dragged on until spring. Every single test came back negative—autoimmune stuff, blah blah blah—I spent a fortune on bloodwork and everything was fine. My doctor just shrugged and said I probably did something playing soccer or whatever, but I don't remember anything like that (can you imagine? I know exactly when the pain hit, and I don't even play soccer). The only thing off was my bilirubin, sitting between 40 and 80. Then, late winter 2006/2007, I developed chronic erosive gastritis out of thin air. Treatment was Nexium and "good luck." By fall 2007, carpal tunnel syndrome popped up in both hands, and by early winter, it was hitting my feet too. At the same time, I'm dealing with intense nerve pain in my hips, neck, and groin. On top of that, both my eyes get inflamed—it looks like uveitis, but my ophthalmologist claims they aren't really equipped to handle it if it's something autoimmune (apparently most eye doctors just don't get it). Then there's the horrific bathroom issues—suspected Crohn's. I dropped 25 pounds in just two months. I basically spent New Year's Eve on the toilet. I've also got these weird red sores, like canker sores, appearing in my mouth. By winter 2008, I ended up in the hospital. Bloodwork for autoimmune disorders was normal, except for that elevated bilirubin again. Gastroscopy showed gastritis, but the colonoscopy was clear. X-rays were perfect, yet I could barely get out of bed. To make matters worse, this strange, painful rash keeps appearing and disappearing every couple of weeks. While I was in the hospital, I started having pain when urinating, but all the swabs for bacteria and viruses came back negative. They discharged me without a diagnosis, but they put me on Sulfasalazine. In the spring of 2008, I started the Sulfasalazine treatment. Everything I just mentioned still hurts, though since starting the Sulfasalazine this fall, it feels slightly less intense. For the first time in seven years, my bilirubin is under 40, though I don't see how that has anything to do with Sulfasalazine, which is usually for Crohn's or rheumatoid arthritis? So, what now? They're sending me for more autoimmune testing, but I already know it’ll be negative just like before. What I really want to know is: does anyone know if it's actually possible for autoimmune disorders to show up negative in bloodwork? Seriously, tell me I'm not the only one this happens to. Even today, I can barely write (college is waiting for me to get better), I can't walk much, I have constant painful bowel movements, and my eyes are itchy and red... it's awful. And the doctors? They just scratch their heads. One guy even tried to refer me to a psychiatrist because he thought I had an eating disorder due to the weight loss. Unbelievable. Thanks for any comments you can give. Anything would be more helpful than what I've gotten from my doctors (with a few exceptions, of course—there are a couple of good ones who actually try to help). Hang in there, everyone. I hope you all spend as little time on this forum as possible, because that means you're healthy!

Robin Hall4 said:autoimmune disorder

Which one specifically?
What kind of diagnoses are we talking about?
And where have you been seeking treatment? Any specific hospitals or departments?

Have you ever visited the specialist over at Anne's office? Maybe Bosnic could offer some insight—they're supposed to be among the top tier in the field...

jadesailor14 said:Which ones?
What diagnoses are we talking about here?
And where have you been treated? Which hospitals or departments?

Rheumatology, gastroenterology (internal medicine department)... basically everything. They really tried, though—did a full workup, gave me all the bells and whistles—but still nothing. I won't even mention how they lost all my records, which forced me to wait three months for a colonoscopy. Honestly, by the time they found my paperwork, spring had rolled around and I started feeling better on my own, so it’s no surprise the colonoscopy came back clear. I don't have a definitive diagnosis yet. My discharge papers just list: DIAGNOSIS: Gilbert syndrome, Diarrhea in obs., suspected spondyloarthropathy. As far as the doctors are concerned, I'm practically healthy because every single test says so. But that doesn't exactly help when I'm feeling absolutely miserable, especially now that fall is hitting. And please, don't ask how I managed to type this out—this carpal tunnel isn't letting up one bit.

Melissa Moore39 said:Have you ever checked out the immunology clinic with Anne? Maybe Dr. Bosnic could offer some insight—they’re supposed to be among the best...

From what I hear, Dr. Bosnic is an expert, but honestly, not for my situation. That doctor actually asked me if I was intentionally making myself throw up. It was completely off base. Most days, I'm fighting just to keep *anything* down, not trying to purge. I literally buy Ensure shakes just to try and maintain my weight. But she just jumped to conclusions because of my weight loss. If she ever had to deal with twelve bowel movements in a single day, she’d realize how easy it is to drop 20 pounds.

Robin Hall4 said:Hey everyone—I need some outside perspectives because I can't make sense of my own situation anymore. Where do I even start? Here’s the deal. I’m 23. No drinking, no smoking, no drugs 🙂 For the last two years....

Let's rewind to two years ago. What was your life actually like before these health issues started cropping up? Did you travel somewhere, change jobs, or pick up any weird habits? Try to dig deep and let us know.

Robin Hall4 said:Honestly, if she ever had to deal with twelve bathroom trips in a single day, she’d drop twenty pounds in no time!

My dad has been dealing with colitis for 25 years now, so he definitely keeps his weight in check thanks to that, 🤷

but about seeing a neurologist? Especially since you're having vision issues...
there's this wonderful private ophthalmologist in Chicago who specializes in working with neurological patients.
Plus, you have plenty of great neurologists to choose from out there!

Maria Grant42 said:Let's go back two years. What were you up to right before all these health issues started cropping up? Did you travel anywhere or pick up any new habits? Try to dig deep and let us know.

I was going to college in a nearby town. Honestly, I’m not exactly a daredevil—I’ve been in the same relationship for five years, and the most reckless thing I ever do is miss a deadline at school. 🙂 I haven't traveled anywhere in years. Not since the early 2000s, really, and even then it was just staying close to home. I sometimes wonder if I picked something up somewhere, though they ran a ton of tests on me for viruses, including hepatitis and things like that. The only thing that actually came back positive was an EBV infection, which is supposedly inactive now, so hopefully that's a good sign? One doctor mentioned that certain infections can trigger this kind of reaction, potentially leading to autoimmune diseases... hmm.

jadesailor14 said:My old man’s been dealing with this for 25 years now (colitis stuff), and he still manages to keep his weight steady.🤷

And what about seeing a neurologist? Especially since you've been having those vision issues.
There’s this one private ophthalmologist in Chicago who specializes specifically in working with neurological patients.
Plus, you’ve got plenty of neurologists to choose from out there.

Ugh, I’ve already done the whole thing—seen specialists privately and went through the system at the Mayo Clinic to see a neurologist. They ran an EMG on me (you know, that thing where they poke you with needles and run electricity through your nerves?), and they diagnosed me with Carpal Tunnel and some tiny "lesions" on my neck and wrist nerves. But apparently, that's not important? I mean, seriously, it doesn't sound "unimportant" to me, but okay, whatever. Especially the carpal tunnel part. I can barely even hold a pen, and they're acting like it’s nothing? I guess they think they know better than I do...

Robin Hall4 said:Hey everyone—I really need some outside perspectives here because I can't seem to think straight anymore...

To make a long story short—just look back at my previous posts to see what I've been dealing with. I had Crohn's disease. Now, I'm pretty convinced that what worked for me could help you too. At worst—though I doubt it—it won't make things worse, but I'm certain it’ll ease at least some of your symptoms, if not all of them...

www.miraclemineral.org

If you have questions, just shoot me a PM.

And hey, if you aren't into alternative stuff outside of standard medical advice, don't be mad—I was just trying to help.

Robin Hall4 said:I went to college in a nearby town. I’m not exactly a thrill-seeker—been in the same relationship for five years, and the most dangerous thing I ever do is miss a deadline at school. 🙂 Haven't traveled anywhere in ages. Nothing outside of the States since 2000. For all I know, I might have picked something up somewhere, but they've run tests for plenty of viruses, including hepatitis and whatnot. The only thing that popped up was an EBV infection, which is supposedly inactive—which I assume is a good thing? One doctor mentioned that certain infections can trigger this kind of reaction, leading to autoimmune issues... hm.

What kind of hobbies are we talking about? Sports? Water activities? Hunting? Fishing? Is there a river, a swamp, or some lakes near you? Any pets, or have you had any in the past?

If you have them handy, list your latest blood work results (full CBC and liver panel) and your urinalysis.

Are you still dealing with diarrhea? A rash? Any occasional fevers?

In my opinion, Gilbert syndrome definitely isn't your diagnosis. Aside from mild, intermittent jaundice and moderately elevated bilirubin, Gilbert syndrome doesn't cause any actual symptoms.

Look, I know you’re not in the mood for jokes right now, but a little levity might actually help. There’s this one diagnostic genius out there, though finding him isn't exactly easy. He can be a bit difficult to deal with, but once he commits to a case, he hits a hundred percent success rate. Mind you, he’ll probably drive you to the brink of death before he figures it out... then, just when you think it's over, he'll have this sudden epiphany and tell you it was just chickenpox or something. He'll hand you a miracle cure, and you'll be walking out perfectly fine the next day. I can't recall his actual name, but everyone knows him as DR. HOUSE!
Don't be mad, I'm just teasing. I really hope you start feeling better soon and get past this nightmare that's been making life so miserable.

Douglas Fowler said:Look, to make a long story short... just look back at my old posts and see what I've shared about my own journey. I dealt with Crohn's. Now, I’m pretty convinced that what worked for me could really help you out too. In the worst-case scenario—which I honestly doubt—it won't make things worse, but I am certain it’ll ease up some of those issues, if not all of them.

www.miraclemineral.org

If you have any questions, just shoot me a PM.

And hey, if you're not into the alternative stuff or anything outside of what a doctor prescribes, don't be mad. I was just trying to help.

Thanks for the link. I'll read through everything and then send you a PM.

Maria Grant42 said:What kind of hobbies do you have, or used to have? Any sports? Maybe something water-related? Hunting? Fishing? Is there a river, a swamp, or lakes near where you live? Do you have—or did you ever have—any pets?

If you have them handy, please list your recent blood work results (full CBC and liver values) and your urinalysis.

Are you still dealing with diarrhea? A rash? Do you get an occasional fever?

In my opinion, Gilbert syndrome definitely isn't your diagnosis. Aside from some mild, intermittent jaundice and moderately elevated bilirubin, Gilbert syndrome doesn't actually cause any symptoms.

Unfortunately, I don't have my lab results right in front of me to "list" them out, but I can tell you everything was within the normal range except for the bilirubin. For the first time in years, it hit 23, whereas usually it stays under 90. Why now? Honestly, I have no clue. Anyway, once I get my hands on the paperwork, I'll post them here.
Before this all started, I used to swim, ride my bike recreationally, and go rowing. You could say I was pretty active until the pain kicked in. Right now, I've got this weird "inflammation" in my eyes; they look like I stayed up all night partying instead of sleeping. My digestion is acting up too, though not nearly as bad as those damn tendons in my hands, or the nerves in my wrists and elbows. That's just when I'm in a relatively good phase. But when the "bad" period hits, everything I've ever suffered from seems to "collapse" onto me all at once within a month or two. It usually happens in November and December—it’s funny how it happens like clockwork every single year.

Regarding the Gilbert thing, they only mentioned it because they couldn't explain the bilirubin. No one actually tested for it or anything. It was just based on the high bilirubin levels.

P.S. Thanks for the suggestions.

It strikes me that your symptoms bear a striking resemblance to what someone might experience during an allergy flare-up, though in your particular case, it seems to have spread across quite a few different areas of the body. I can't help but wonder, have you ever actually been screened for things like Candida or perhaps some sort of parasitic infection? To my mind, this really does sound like it could be fungal or even something parasitic in nature. One must be cautious, however, because I've heard many stories where parasites remain completely undetected by standard tests, yet they go on to wreak absolute havoc on a person's digestive system.
There are certainly methods to rid oneself of these issues after a significant amount of time and discipline—often relying solely on dietary adjustments and certain nutritional supplements—but before you embark on such a journey, you really ought to try to determine if that is indeed the root cause.