Discussions By Condition: I cannot get a diagnosis.

Completely perplexed by mystery illness

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: Aethumus
  • March 25, 2007
  • 08:58 AM

Okay, this is a long one, but I'm going to try to explain everything the best I can.

I'm eighteen years old, male, a smoker of one pack a day for a year, and the last four or five months have been horrible for me.

I grew up in a northern state. Aside from being overweight, I have never had a significant health problem. In September of last year, myself and some friends moved down to a Southern state. The circumstances surrounding the move, while I don't feel comfortable giving details, were very unnerving and possibly even traumatic. I experienced severe anxiety and fear for a prolonged period of time (but don't just go, "oh post traumatic stress disorder", hear me out please).

When we got down to this Southern state, we were very poor. We ate little and seldom, and I got very used to not eating much. By October 2006, I began to notice that something was just not right. I had been feeling very strange in my gastroentestinal tract for a while, and one particular night I woke up with a severe stomach ache (turns out it was probably gallbladder disease). I called in to work sick and in a few hours after drinking some Sprite I felt normal again.

My health continued to decline. I had a few more of these "stomach aches" in the next few months, but my main complaint was that I just was "not feeling normal inside". It's extremely hard to describe, but it's as though everything just below the chest is extremely sensitive. You know how you can focus on a part of your body and "feel" it? Well, my entire gastro tract is in that focused state, and is constantly sending signals. It's like I can feel it 24/7. Hypersensitivity.

Anyway, this strange discomfort/pain/sensitivity lasted a few months, and I took some time off of work. I ended up not returning because I still feel like I have a constant stomach virus mixed with hypersensitivity along the gastro tract.

A couple of weeks ago I had a gallstone attack and was in horrible pain, but it only lasted about an hour. A week ago my gallbladder was removed, after seeing several doctors about this mystery illness. I do feel better now, my intolerance to fatty foods is gone, but I'm still not at 100%. Before, when I was normal, I didn't notice my stomach, or my intestines. I got hungry, I ate, I was full. Now I don't even feel hunger. Just a "bleh" feeling that changes to a different kind of "bleh" feeling when I eat. Nothing has any impact on this strange hypersensitivity. Diet doesn't seem to matter, bathroom use doesn't seem to matter (although I have had about four BMs per day for weeks now), exercise amount doesn't seem to matter..I feel my stomach and my intestines all the time.

It's not like it's severely painful, it's not even uncomfortable some of the time. It's just...there. It's uncomfortable enough to basically put a halt to my life. I'm still very young so this has been a physical and emotional blow to me.

I have researched just about every gastro disease there is, and nothing quite fits me. I don't have the cramping and bloating associated with irritable bowel syndrome (at least not chronically), I don't have bleeding in the stool, I don't seem to have any real symptoms that you could tell a doctor, except I do sometimes have naseau and infrequently vomiting (the "stomach flu" type feeling I constantly have), but really this illness and how hard it is to describe just makes finding a diagnosis or a cure maddening.

I'm going to list a few more things I can think of that have been strange about me lately, maybe one is a sign:

My middle fingers have both grown about 1/8 inch, and strangely have turned upwards slightly and both of them point noticably towards their respective pinky finger, in a gentle curve. I just noticed this about two months ago. It's not painful at all.

After urination, I have a pressure kind of pain in the pelvic region (in the pubus). It starts soft and becomes moderate, then goes away completely.

Upper back pain that has lasted for quite some time. The pain between the shoulder blades went away when my gallbladder was taken out, but I still have pain just under my right shouldblade.

I can pop way more joins than I should be able to. I can pop my sternum using my pectoral muscles, and sometimes this provides a small amount of relieve for the mystery illness (no idea why). Doctors have just given me puzzled looks over this. I can pop my shouldblades individually and my middle back just by flexing. It feels like I'm "coming undone".

Maybe some of this is unrelated, but maybe it will help.

If anyone has any idea I would certainly appreciate a helpful hint. This condition has been with me for close to seven months now and clearly it was not all gallbladder disease. Something else is at work and I'd really like to start feeling normal again.

Many thanks :)

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12 Replies:

  • Well, you just described what I have been going through now for a year and 3 months. I have some questions for you..I find that sharing information between people I find who have this strange mystery illness helps. I think there is an explaination out there and it's rather like solving a mystery, at some point, one of us will come up with a diagnosis, or at least a couple of them. I hope that if they do, they come back and let others know. MY questions:What happened before this change in your life? I describe my illness as a change that just occurred, I was not the same after and haven't been since, although it has gotten slightly better. Varioius things happened to me before the onset, I visted both my elderly grandfathers, one was suffering from a respitory illness, the other died that month from organ failure supposedly from diabetes, I was with him when he died. I also started dating someone new at the time and had been recovering from a septplasty from a broken nose. At the time Dr's only found I had at some point had mono, and the pavro virus in my life. Nothing more than that..In the beginning was the illness much worse? Diziness? Fevers on and off, dry mouth, tingling throughout body? This is what I found, in the beginning for about 5 months I was reallly bad, but I was scared, and the Dr's were not listening, I should have pushed harder then for a diagnosis when I felt worse. At this time I am suffering less, like you my gasto situation is totally bizzarre. Can't get normalized, eating and digesting has become overwhelengly a nuisence, although I am not disfunctioanl, but just no the same. MY joints still ache a bit when my stomach acts up a lot, and acid reflux is bad. Any relative test results? I had every test done over a period of one year, nothing...no HIV, Lupus, lime, thyroid, etc...IS anyone around you sick? Anyone close to you suffer similiar illness? Anyone you were around before you got sick was ill? Don't give up on a diagnosis, its hard to live like this, but I'm gonna try to keep going, I hope you do too, me
    Anonymous 42789 Replies Flag this Response
  • Well, you just described what I have been going through now for a year and 3 months. I have some questions for you..I find that sharing information between people I find who have this strange mystery illness helps. I think there is an explaination out there and it's rather like solving a mystery, at some point, one of us will come up with a diagnosis, or at least a couple of them. I hope that if they do, they come back and let others know. MY questions:What happened before this change in your life? I describe my illness as a change that just occurred, I was not the same after and haven't been since, although it has gotten slightly better. Varioius things happened to me before the onset, I visted both my elderly grandfathers, one was suffering from a respitory illness, the other died that month from organ failure supposedly from diabetes, I was with him when he died. I also started dating someone new at the time and had been recovering from a septplasty from a broken nose. At the time Dr's only found I had at some point had mono, and the pavro virus in my life. Nothing more than that..In the beginning was the illness much worse? Diziness? Fevers on and off, dry mouth, tingling throughout body? This is what I found, in the beginning for about 5 months I was reallly bad, but I was scared, and the Dr's were not listening, I should have pushed harder then for a diagnosis when I felt worse. At this time I am suffering less, like you my gasto situation is totally bizzarre. Can't get normalized, eating and digesting has become overwhelengly a nuisence, although I am not disfunctioanl, but just no the same. MY joints still ache a bit when my stomach acts up a lot, and acid reflux is bad. Any relative test results? I had every test done over a period of one year, nothing...no HIV, Lupus, lime, thyroid, etc...IS anyone around you sick? Anyone close to you suffer similiar illness? Anyone you were around before you got sick was ill? Don't give up on a diagnosis, its hard to live like this, but I'm gonna try to keep going, I hope you do too, meThanks for your reply. It feels good to know that someone out there has a strange GI illness other than me.You asked what my life circumstances were like. In September, when I arrived to this Southern state, I was completely normal, although I had just been through a very traumatic experience. I was still completely normal though. Then slowly and gradually, I began to feel ill. It happened about the same time as I lost about 30 - 35 lbs in a month from the lack of food.I have not experienced any dizzyness or tingling, and I do not have any problems with heartburn, especially no problems with acid reflux. I agree with your point on how eating and digesting is just such a huge chore now, though. I don't feel hunger, I don't feel full. I just feel ill, then when I eat I feel the food in my stomach but it doesn't seem to matter. I'm not hungry anymore (since I rarely feel hunger in the first place), I just feel a different kind of sick. Then that goes away and is replaced with the "stomach empty" kind of sick all along my lower GI tract.I have had three bloodworks and two CT scans, although those were done for the gallbladder problems. The bloodworks came back normal, except for a slightly high white bloodcell count and a slightly low PVC count, whatever that means. The abdominal CT was normal, although it did show a mass of swollen lymph nodes in the lower left region. I don't really experience much discomfort there.Do you also get that feeling along your entire GI tract that we don't have words for but it's just "there" and it's uncomfortable? It's not bloating or cramping, it's not distention, it's just "I don't feel good here"?It's so frustrating to try and describe...I'm not going to give up on it. Over the next couple of months when I find time I'm going to see GI specialists and try and get this thing fixed. Like I said, since I haven't been checked for gastritis or anything else related to the GI tract yet, it may not be too late for me. Maybe I just have a common illness that can be cured. If they can't find anything wrong with me, then I'm worried because I do not meet the Rome II criteria for IBS, which is the general "we don't know what's wrong with you" illness doctors like to give you when they're baffled.All I can tell you to try and help you solve your mystery is that throughout the day the feeling gets better and worse. At best I feel about 50% normal. At worst maybe only 10%.The worst part is I have to work long hours at a crappy fast food place and the only thing I want to do is have this thing fixed...oh well, I have to pay the rent. I guess I'm blessed that I can even afford insurance so I can see the GI doctor.Anything you've found that seems to help the "bleh" icky feeling at all? I've tried nearly all OTC medicines, nothing seems to do much. Pepto Bismal seems to make it worse, and things like magnesium citrate and magnesium sulfate don't seem to do anything but make me go to the bathroom more often (they are laxitives).I just don't know. It's really frustrating but I'll try to stay positive about it. Since this horrible thing happened to you and me it probably happened to a lot of other people, and maybe if I can find enough of us sufferers out there I can get enough information on what's going on.What do you know about medical technology? Can a doctor "scan" me to see if I have any strange nerve pathways or something that could be causing this? Or is it basically just stick a tube up a very uncomfortable position and the doctor uses his eyes?Good luck with your stuff. I really hope we both find an answer someday :)
    Aethumus 8 Replies Flag this Response
  • Oh also I forgot to add that no no one around me was sick and whatever I have is not contageous, I share drinks and cigarettes all the time and no one around me ever complains about the same things I do.(wait for the big post it went to the moderation team)
    Aethumus 8 Replies Flag this Response
  • Your orthopedic symptoms made me think about marfan syndrome:http://www.marfan.org/nmf/index.jspGood luck in finding an answer to this.
    Anonymous 42789 Replies Flag this Response
  • I know exaclty how you feel...I just want some answers, and I also have insurance, and just getting the Dr's to do the ***n tests is a struggle. I have this awful feeling that whatever it is could be found easily if they looked in the right spot, but it has gone to long and now it is too late....I'm not sure I will ever feel even 80% better, I'm having a hard time at the moment maintaining the small bit of good health that I have...I feel like giving up all the time. No one could possibly understand, and until a year and 3 months ago, I was essentially fine. There seems to be no going back, at least not by any of the measures I have taken. I quit smoking after 10 years, I started going to the gym, I eat better, still, no change...I wish I could check myself in somewhere, and that if I did, they could figure this out and magic me back to good health. If I could, I would have a new appreciation for life...I really would..Good luck to you, and try not to feel alone, I'll do the same. I've talked to a few people on this site that are in similar circumstance, and even though we have no one around us to listen, at least we can post here. I have a Dr's app't tomorrow. I've been trying to think of ways to trick the Dr. into running more tests..we'll see. I will post any relative results. Good luck to you
    Anonymous 42789 Replies Flag this Response
  • Checked out the Marfan syndrome, I guess I'll mention it to my doctor but it doesn't sound to me like I have it.Thanks for the support. Today was a really bad day for my illness and I started working again today too :(
    Aethumus 8 Replies Flag this Response
  • Sounds like you might have an intolerance to something your eating, like breads or dairy. You could try to keep a journal of what you are eating, then stop eating , say breads/wheat for a bit and see if it improves. Hope you feel better soon.
    Anonymous 42789 Replies Flag this Response
  • Thanks for your reply.Today I had an average morning, although I felt "stuffed up" inside as far as lower body/torso goes. Going to the bathroom helped this, so it could possibly be IBS or perhaps it was just normal. Later this evening I took a chance and ate some Jack in the Box. The burger and fries didn't cause any pain, although I had to use the bathroom again shortly after eating (my doctor told me that, without a gallbladder, this sort of thing can happen).Strangely, the fatty food I ate seems to have invigorated me a little. I have more energy. My system still feels weak and "yucky", but maybe part of my issue is the fact that I 1) Do not eat at regular times 2) Eat basically nothing (some rice here and there, maybe an apple), and 3) Generally have been consuming about 500 food calories a day for months now. I know that my body is in survival mode, because even at around 500 calories a day for months I don't lose weight.Maybe I'm suffering from malnutrition? I'm sure that not giving your body the food it needs can cause all sorts of pains and discomfort.I'm going to try to eat balanced meals three times a day like I normally would. Food makes me naseous sometimes, and I fill up really fast (I feel full like after literally two or three bites usually. I mean, I feel completely full.), but I'm going to try. Maybe after this period of "food famine" in my personal life eating regularly and stretching out my stomach will help my body sink back into its normal rythm.I'll try that idea out about keeping a food journal, and I'll record what seems to make me feel worse and what, if anything, makes me feel better. Maybe I got suddenly alleric or intolerant to a bunch of different foods? Stranger things have happened!Thanks everyone for the support. I'll try to keep this thread alive as I discover what helps me, so maybe it can help others who deal with chronic torso problems (I'll keep an eye on my back problems, too).
    Aethumus 8 Replies Flag this Response
  • I suggest a regular balanced diet and some exercise. It is amazing how bad you can feel without those two things.
    Anonymous 42789 Replies
    • January 6, 2008
    • 03:16 AM
    • 0
    Flag this Response
  • dear Aethumus Have you had all your vitamins checked and also electrolytes?You said this started when you didnt have much to eat so its quite possible that you could have become malnutritioned and these symptoms could be related to a vitamin/s deficiency.
    Anonymous 42789 Replies
    • January 7, 2008
    • 05:39 PM
    • 0
    Flag this Response
  • Some people develop gallstones after a fasting diet, so it looks like you did also. The south is endemic to worms and other parasites. Could this be your problem?
    rad-skw 1605 Replies
    • January 8, 2008
    • 01:21 PM
    • 0
    Flag this Response
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  • I suggest being tested for food allergies. Start with the standard IgE blood test or the "scratch test." If any foods come up positive, avoid them and see if you feel better.If they are all normal or if omitting the ones that were positive doesn't help, ask for IgG blood tests. IgE are immediate reactions (minutes). IgG reactions take 3 to 5 days. That's why it's so hard to diagnose an IgG food allergy, because it's delayed by several days.Food allergies can give you really odd symptoms. My wife, son, and I all tested negative for IgE, but we all came up positive for wheat and milk. When my wife has wheat, she gets a rash on her hands (eczema) and has poor sleep. All kinds of odd symptoms can happen from food allergies. My son and I lose weight unless we take enzymes. Our bodies are clearly not making the right enzymes and that can lead to nutritional deficiencies.I recommend looking up the IFM online and finding a Functional Medicine doctor. They will understand the IgG tests, unlike my wife's allergist, who told her that it's impossible to get eczema from wheat. Stupid, narrowminded doctor...
    Anonymous 42789 Replies Flag this Response
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