Discussions By Condition: I cannot get a diagnosis.

Would like to know what this is!

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Anonymous
  • November 24, 2006
  • 02:31 PM

Ok, here goes, and hopefully you can help me out here.

So, most of the time, I am feeling just fine, the occassional sickness like normal. Then, suddenly, and for no reason that I can see, this weird feeling comes over me.

I will be either just sitting on the couch, or laying in bed, or anything really, where I'm relaxing (as far as I can remember). I will start to feel almost sick, but not really. Like my stomach is empty, and I start getting really weak. My breathing starts getting more pronounced, and I almost start feeling dizzy. If I get up, out of my relaxation spot, my hands and feet have a slight feeling of tingling, albeit not the sharp needles and pins, just a slight feeling, not enough to be noticed. I get cold sweats too.

What usually happens, is that I have this huge craving to eat something, or drink something when that happens, and I don't know why. So, I make my way to the kitchen, and usually walk away with something much larger than a normal snack, in my opinion. Last night, when this happened, I walked out with 3 bread with jam and peanut butter, and a chocolate milk. This was at 12:30 in the morning. I ate that all down, even though my stomach didn't really want the last of it, but my body wanted me to eat it. Then I sat there for a bit, turned on a show, and passed out (cause I was tired too, not sure if that was this weird thing, or if it was due to the 12:30 thing) before a 20 minute show was over (that includes eating time during the show too.

Now, I awake the next morning, with a general laziness, weakness, stomach weirdness, like it's bloated, but I'm hungry. This can't be due to lack of food, because yesterday, I had a flaked ham sandwich for lunch, with a drink, and then a full plate of tasty taters, and chicken nuggets for supper, and then had 2 oranges, and a drink for a snack at around 10:30.

I've gone in for tests before, but I'm usually feeling good by the time I go in for the tests, and of course, nothing is found. This has been plaguing me for at least 7 years that I can remember. This does pass, sometimes quicker than others, (a couple hours, to a day) but it takes me down big time when it does hit me. It worries my wife, and myself, and I've got a daughter, so I'd like to know if this is something that could have been passed on to her, that maybe if I could figure out what it is, I could help her out in the future. Can anyone help me out?

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6 Replies:

  • Have You been tested for epilepsy?
    Anonymous 42789 Replies
    • November 25, 2006
    • 05:06 AM
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  • -Always hungry-Bloated-Palpitations-Dizziness-Fatigue-Tingling extremitiesI would say, for some reason your body isn't absorbing nutrients through the digestive system. This could very well be because of a food allergy or intolerence. The bloating associated with the hunger is a clue here, but it also sounds like the general symptoms could be any source of mal-absorption or even another chemical or hormonal imbalance.The reason I like to inquire about food intolerences is because they are actually rather common compared to how often they are diagnosed. People of Northern European descent run a double risk of wheat/rye/barley intolerence, and Africans and Asians run an even higher rate of lactose intolerence as a percentage of the population. Heck, the gluten intolerence rates found in Irish villages is three times higher than the general white population, which is more at risk to begin with. Your diet sounds like it has quite a bit of wheat in it. The way you described craving food then forcing yourself to eat toast reminds me a lot of what I used to go through. IT was if my brain knew I needed calories but my stomach knew the bread was no good. I would often feel like I HAD to eat, but eating the wrong things would make me want to throw up even though I was starving. Or I would end up in the bathroom 30 minutes after eating, and an hour after eating, and an hour after that too!Does the family medical history have any clues? Has anyone in your family had similar issues, or any chronic medical condition that may have been misdiagnosed?
    Azaral 152 Replies
    • November 25, 2006
    • 03:54 PM
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  • Hi,A long reply, I hope you understand it. I have a connective tissue disorder called Ehlers-Danlos Syndrome EDS. I have shared your very same symptoms since the age of 12, I am now 37 and only this past month have I had a doctor and an endocrinologist take me seriously, so I do hope you don’t have to wait as long for a diagnosis to your problems. EDS is an inherited syndrome and goes mostly undiagnosed. There are six types of EDS and I am type III, and possibly have a mutant gene that prevents me for manufacturing a particular protein. Visit www.edsf.org just to eliminate any possibility of you having this. I have been suffering muscle wasting for several years but this has been ignored by doctors, but now they cant ignore it as I have deteriorated so much and I feel could have been avoided if the doctors had listened and done their job.Like you, tests showed nothing relating to hyperglycemia or diabetes, and I generally felt fine when I went for tests.But I am insulin resistant (IR) and no matter how good I felt at the time of testing a GTT (glucose tolerance test) will show IR. This baffles the doctors as individuals who are IR are in one or more of the following categories: diabetic; overweight; abuse steroids; have a pituitary tumor; have adrenal burn out or tumor; Syndrome X. I can not confirm Syndrome X in myself but I have an appointment with and endo on the 9th of January to be investigate for cortisol, insulin and growth hormone and insulin like growth factor 1 (IGF-1) levels. Syndrome X can cause your symptoms. So can being an adult with growth hormone deficient (GHD); no this doesn’t only affect dwarfs, it has different implications to individuals who become GHD during adulthood. I don’t fit any of the typical cause for IR. Presently I can only conclude it is my body’s response to protein deficient gene which causes my body to eat its own muscle tissue for energy and not glucose.So you have some options and only elimination will have you an answer:Syndrome X; diabetes; overweight; a possible link to one of many connective tissue disorders. They all have the IR factor.An ITT (insulin tolerance test) will also read cortisol, growth hormone and insulin levels, and this is done through an endocrinologist. What ever your problem it is endocrinological.Also I advise any tests result you personally read. Do not rely on being told all is negative or fine, read them for yourself, though hormone readings and the like are mostly understood by endocrinologists and not us lay men, it will at least tell you the acceptable range insulin comes within, if it is over any of the recommended ranges it is NOT NORMAL. I was told my last two GTT were normal, but when I read just out of curiosity the results two weeks ago it stated I was IR. Most doctors do not realize the long term implications of being IR and so say results are normal. If you are IR it is not normal and will damage your health in the long run, whatever the cause.I have known I was IR for years, but an endocrinologist many years ago said I was healthy and thus no doctor would do further tests or investigations. Having static blood sugar levels after two shots of insulin is NOT NORMAL, this is what happened to me but until now I had no proof. I would be VERY interested if you find you are IR and what caused it in your case, as I have ALL symptoms you describe to varying degrees. I applaud you for being determined to find out because of your daughter. I have no children and glade I don’t, but I suppose if I did they wouldn’t have to suffer like I have since I would know what was going on with them and provide the appropriate support.All the best.Agape,searchingsam
    Anonymous 42789 Replies
    • November 25, 2006
    • 04:14 PM
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  • PS. I agree with Azarel. I am wheat intolerant also. No bread, oats, pasta and so forth these cause me to I feel very disoriented, drowsy, fatigued and bloated. Do have his checked also. I have eliminated all these food stuffs for some time now (years) but I still suffer all your symptoms, but eating these foods makes me feel TONS worse. It's called having more than one condition, but again they may be linked.Agape,searchingsam.
    Anonymous 42789 Replies
    • November 25, 2006
    • 04:21 PM
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  • Hey Sam,Are you sure your diet is "clean?" There are hundreds of sources of "hidden gluten" and it doesn't necessarily get labeled on the allergy list as "wheat." Even after the new "stricter" rules go into effect next year, food manufacturers will be able to list rye and barley under catch-all ingredients like "Flavoring, binder, starch, broth, etc.." Of all the corn- and rice-based cereals in the typical grocery isle, I've found only Cocoa Crispies is really gluten-free because of the use of gluten-based flavorings is so widespread. (Mmm and I sure do miss a good chocolate malt!)I've heard of the gluten intolerence causing insulin resistance, and even a small small bit of gluten can halt the healing process. Considering as many as 30% of people attempting to eliminate gluten end up eating enough to continue the chronic conditions (With one study showing only 1 mg of gluten every day was enough to cause the patient to be unable to heal!). There is also a rating for Celiac's disease. A rating of 4 means the damage is so significant there is little or no hope for digestive recovery :( If this is the case, corn and dairy would be big no-nos because of their similarity of producing opioid peptides when only partially digested. This is why one intolerence, untreated, often leads to others.Good luck and good health! Don't search too hard, Sam, it seems like you have a really good start to work with. Make sure you have the gluten thing down 100% before you start looking for other medications and solutions! This intolerence will mess EVERYTHING up when its unchecked, and the doctors can look and look all they like, but they'll never find anything but symptoms of Celiac's!
    Azaral 152 Replies
    • November 25, 2006
    • 04:41 PM
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  • Thanks for the info Azazel.Interesting, but of no surprise, that those who are glucose intolerant also have showed signs of insulin resistance. Very, very interesting and very helpful. No unfortunately my diet is not 100% clean. Like you mention, with so many ingredients that are hidden in vague names and numbers it is nearly impossible to avoid some stuff. It is for this reason I will be going back onto raw vegatables and whatever has absolutely no binders and so forth. I am also sure that an intense itch I get over my left shoulder blade and middle of my arms may be food allergy related or something in my environment. It can get all too complicated. That is why I want just another ITT test and a few simple blood work stuff and concentrate on the diet. What is your opinion of hard Tofu? I’m thinking of just getting my own soy beans and making my own soy milk; just plain water and soy.I wouldn’t be surprised if most people with connective tissue disorders have more of a vulnerability to allergy as our bodies can’t heal and fight things off as easily.I have been trying to access a EDS support group so I can exchange info, but its site was hacked in August and the message board is still down. People can be so charming. Another two support groups have yet to get back to me over membership. All the best to you also,Agape,searchingsam
    Anonymous 42789 Replies
    • November 25, 2006
    • 10:32 PM
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