Discussions By Condition: I cannot get a diagnosis.

Unxeplained Wasting Syndrome

Posted In: I cannot get a diagnosis. 32 Replies
  • Posted By: Anonymous
  • March 21, 2007
  • 00:04 AM

Hi; I also posted this in the Endocrine section of the boards. I'm wondering if someone here might be able to offer some kind of advice or explanation as to what is wrong with me.

I am a 24 year old male who, until last year, was totally healthy. Last November I got mononucleosis which lasted 3 weeks. During the time I had mono, I noticed my body mass was significantly decreasing (as my clothing was starting to get too large) however my weight on a scale was the same as always. After recovering from the infection, my "visable" weight returned to normal. Also after the infection, however, a hard lump appeared on my jawbone, below one of my back molars.

The lump has gotten larger and the adjacent bone is now expanded as well. There is no tooth infection causing the swelling, there is no pain, there is no sensitivity, etc. X-rays and CT scans show nothing. I finally pushed an oral surgeon to perform a biopsy early February, and afterwords the "tumor" area got slightly larger, and I started to waste away. The biopsy came back as non-malignant (normal bone).

By my own account, now in late March, I have lost some 20+ pounds of fat/muscle/both, yet the scale has not changed at all. I am a tall, relatively thin person so the doctors are at a total loss as to where this weight is going. Obviously if I had a giant mass sticking out of my abdomen or swollen ankles it might explain the issue, but I don't. My entire body is thinning to the point where bones are sticking out and depressions are now clearly visable. My hands and feet pratically look like those of a skeleton and feel that way as well in light of the loss of muscle/fat.

All of my blood work is normal, showing no irregularities. I am HIV negative. Blood sugar testing is normal. Thyroid hormone level is normal. I have no real muscle weakness, no fatigue, and my apetite is normal. The only thing that stuck out was my trygliceride level shot up from something like 80 to 209 in the span of 2 weeks, and my HDL cholesterol went from 54 to 32 in the same period. I have never had high tryglicerides before and never had any cholesterol issues (always low if anything). Cancer-induced wasting, from my research, can indeed cause triglyceride levels to spike, and HDL cholesterol levels to decline. Doctors however, claim it is probably from what I am eating despite my diet not changing.

Since late Feburary, I have also been having chest pains off and on, right around my heart area. I have also noticed a rapid heartbeat upon getting up from sitting.

This is really fusturating because doctors claim there is nothing wrong with me and don't even believe the wasting issue in light of my weight remaining the same. Yet I can SEE myself getting thinner each day and those that know me agree that I have never looked so thin before.

Has anyone ever experienced anything like this? I am quite sure that I have some rare type of cancer (that "conveniently" is not showing up as a tumor on x-ray) as there is absolutely nothing that would otherwise explain this wasting. The wasting only began in relation to this bony mass getting larger/getting biopsied so deductive reasoning implies it has to be related.

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  • Hi again. Just an update of sorts: An infectious disease specialist has confirmed my condition has nothing to do with the mono infection, and a neurologist confirmed that, while I am definately thin, none of my muscles are displaying and kind of indications of atrophy suggestive of a muscular disorder.
    Anonymous 42789 Replies Flag this Response
  • Mr. Concerned,Thank you for posting on my thread; now I'd like to return the favor.First, do I understand correctly that you have not actually lost weight following your bout with mono, but that your weight is sort of redistributed?Second, I want to ask whether you have tried Tagamet for mono. Tagamet has been known to knock out mono very quickly for some people.Third, the only cancer I'm aware of that is caused by EBV infection is Burkitt's lymphoma. Has that been ruled out in your case?Fourth, have your wisdom teeth been extracted, and is the lump on your jawbone where a wisdom tooth used to be?Fifth, elevated triglycerides can be an indication of an inflammatory process rather than cancer.Tim
    Anonymous 42789 Replies Flag this Response
  • "I have lost some 20+ pounds of fat/muscle/both, yet the scale has not changed at all"what was your previos weight and what is your weight now. How tall are you. Have you worked out your BMI(body mass index)
    Anonymous 42789 Replies Flag this Response
  • Hi, thanks for the reply. Let me explain the mono situation; I wouldn't even have made a note of it but I found it quite strange that, during the infection I lost "visable" weight when that is not a symptom of mono at all. Esentially, I had mono for about 3 weeks and during that time, I would guess that I "lost" 5-10 pounds, namely because my body started thinning and my clothing was all somewhat too big. After getting over the mono, and especially after resuming my normal eating, I returned to normal. Then, in January (when the mass in my mouth expanded), the "wasting" started again, and intensified after my biopsy in February.I am currently wearing a T-Shirt that I've had for years, yet I look like it's 3 sizes too big. My body has "shrunk" because of the loss of fat (and possibly muscle, though there is no muscle weakness). My weight, through ALL of this (including the mono) has been 182 pounds. I am 6 feet 3 inches tall. My body fat, at least since the end of February, has been 19%. During the time that I had the symptoms mentioned in my post on your thread, my body fat was down to 8%, though I still had all the "fat" in my thighs and such (which makes me think that it IS muscle I've lost). When I hadn't exercised for a long time, my body fat was at 16% or so. I don't know if my body mass is being "reproportioned" or not, namely because I don't see where it could be going. If my body fat were up to 30% then it could be feasible that what I'm loosing is being replaced by fat, but it's unchanged. Never heard of Tagamet before actually, though I don't know if it would be of any use now since the mono infection left back in November. My EBV levels are still high, which the blood testing diagnoses as a "Current Infection" however the Infectious Disease specialist told me that the levels would remain elevated permanently. They are:Epstein-Barr VCA IGM AB: 4.95Epstein-Barr VCA IGG AB: 4.03However:EBV Nuclear AG (EBNA) IGG: 0.32I had read that AFTER you recover from mono, either the VCA IGM or VCA IGG Antibody levels (can't remember which) will lower and the EBNA IGG level will increase. It's probably absurd, but there is a part of me wondering if I have a Chronic EBV Infection, and that the "wasting" is actually related given that I had a degree of "wasting" during the bout with mono. My C-Reactive Protein (CRP) level is something like 0.04 however, and my white blood cell count is normal; during the mono infection my WBC was at like 16,000 and my CRP elevated. As for Burkitt's Lymphoma, it hasn't been ruled out actually, though I don't think anyone has tested for it. I actually posted on the Burkitt's Lymphoma website (it's burkitts.org or something like that) some time ago however one of the users made a comment that, at this point in time, if I had Burkitt's I probably would be dead because of how fast it is; at the very least I would have major symptoms. I was in Japan during the time when I got mono though, and wonder if perhaps I have some kind of "variant" of the EBV native to Asia. Some website had mentioned about EBV being more severe in Asia actually, and the doctor I had during the mono infection mentioned that there are cases in China of cancer (not Burkitt's) developing after mono. Yes, my wisdom teeth are all out. The lump on my jawbone was originally just below tooth 30, however over the span of a weekend in mid-January, the bone "behind" it (i.e. below tooth 31) expanded. Basically, if I take my finger, place it on my molar teeth, and run it down to the bottom of my mouth, the contour is quite thick. On the other hand, if I do the same with the molar/gum/jaw on the other side of my mouth, there is only a slight contour.I know, this sounds odd because "why would someone do that in the first place?". One of my doctors even asked that. It's because I noticed the changes occuring in my mouth and did all these "self-inspections" as a result. When I had ONLY the pea-sized lump back in December, there was NO contour swelling as described above. A blood test taken about 8 days after the previous one indicated that my triglyceride levels had gone down over 100 points, and that my LDL cholesterol had also gone down a bit. The HDL however, only went up 1 point and is now at 35. However I changed my diet as, for the week or so leading up to that high triglyceride reading, had admittedly been eating a lot of cholesterol. I'm really quite worried...
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  • It's appropriate to be concerned about health issues, but worry is never helpful. Take it from someone who has been through much worse than you. If you are angry or sad about the confusion, inconvenience, etc. surrounding the growth on your jaw, go ahead and get angry or weep, but never worry. Even if your biopsy had been malignant, worry would not be helpful.I am also 6'3", but have never weighed more than 150#. I would consider my ideal weight to be 180#. What you seem to be saying is that your volume has decreased while your mass has remained constant, which is to say that your density has increased, which is consistent with lower body fat and higher muscle mass. All in all, that sounds pretty healthy to me. However, there may be some dehydration and reduced circulation that explains the perceived thinness of your periphery. Since you have no fatigue or muscle weakness, what happens when you exercise regularly?If you'd like to try Tagamet, I might be able to dig up the correct dose for you.Although my best friend is a dentist, I'm not terribly familiar with the tooth numbers you listed. Is the lump on your jaw in the location where a wisdom tooth used to be, or not?
    Anonymous 42789 Replies Flag this Response
  • Hi again Tim,LOL, perhaps worry was a bad term- concerned is indeed a better way to put it. I'm more concerned with the body mass issue than the jaw mass, but the two seem linked in light of one getting larger and the other (wasting) beginning. >Even if your biopsy had been malignant, worry would not be helpful.Yes, that's true. Some things just can't be changed and so worrying about them is futile. >I am also 6'3", but have never weighed more than 150#. I would consider Really? That is indeed underweight. Do you also have a very fast metabolism? All my life I've had one, sometimes to the effect of my eating food and having to go to the bathroom shortly after. Technically this is impossible given the time it takes to digest but nonetheless it does occur. But I am also hungry CONSTANTLY, like every hour or so. >has decreased while your mass has remained constant, which is to say that I'm not sure really. It's not that I look healthy but thinner, rather I am starting to look thin as in "disease thin". My bones are sticking out in some places from the lack of tissue (fat? muscle?) yet, oddly enough, my musculature is still somewhat well defined. But even when I'd never done ANY weight training before, I have NEVER looked like this. Never in my entire life. >Since you have no fatigue or muscle weakness, what happens when you That's when I experience many of the symptoms discussed in your topic. Last spring, when all that started (after the possible-overtraining had occured), I would find myself taking 10 minute WALKS and coming back feeling like I was about to pass out. My heart rate was also altered. The cardiologist had said I was just "out of shape", but I'd been living in a city that winter and been SWIMMING frequently so I found that impossible to believe. Just as you mention, unless I've not exercised in a long time (as in weeks or months) I feel this way. I can't even tolerate exercise that I'd done before the "overtraining". Part of me wonders if I messed up my metabolism at some point: During the years of 2002-2004 I would find myself eating only at night because of my class schedule, and at times exercising on a Nordictrac-type machine and burining 700-1000 calories. Though during that time, I never had any of the symptoms mentioned in your thread. It was only when I got back into weight training summer 2005/winter 2006 that it all began. >If you'd like to try Tagamet, I might be able to dig up the correct dose for Sure, but I don't have mono anymore. Chronic EBV infection possibly. >Although my best friend is a dentist, I'm not terribly familiar with the tooth >numbers you listed. Is the lump on your jaw in the location where a wisdom It's the back molars, not the wisdom teeth. I think tooth 30 is the 3rd molar (the wisdom tooth being the 1st); it's on the bottom right side (left if you look at a diagram). EVERYONE has said it's an exostosis, but that doesn't explain why the bone on the second molar (tooth 31) expanded as exostosis are slow growing and can take years to form, not a weekend. And if all the stuff in my mouth (and even my skull) are just normal bone, it does nothing to explain why I'm thinning out or, for that matter, where the weight is going. Of interest is that one of the "tests" for bone cancer, elevated Alkaline Phosphate, is perfectly normal (the range is something like 30-150 and I'm at like 52). Elevated ALP may indicate bone tissue growth (thus the possibility of cancer). Additionally my Calcium levels are normal (bone tumors often destroy bone which means the body is absorbing the calcium and the level is high) though my issue is hardly one of bone loss...I had really hoped someone in your topic might have offered a test or diagnosis suggestion because, for all I know, the masses are totally benign and my body mass situation is related to the mystery "illness". Anyway, tomorrow (Thursday) I am going to NYC to consult with a bone cancer specialist; perhaps he might see something that the general oncologist (and every other unrelated doctor) totally missed.
    Anonymous 42789 Replies Flag this Response
  • Alright, good to see that you are not really worried. :-) You know, lumps on people's bodies aren't all that rare. My brother has a fatty cyst on his butt and a ganglion cyst on his wrist. But I take it your exostosis appeared rather quickly, and it is interesting that it would appear at the same time that your body mass is redistributing. But please stop using the term "wasting", which is clearly not happening if you are not losing weight. Not being able to exercise can definitely make one's limbs thinner. As I'm sure you know, exercise causes muscles to swell and skin to look puffier as a result of the increased circulation. So it's plausible to me that the thinness you observe is simply caused by a lack of exercise. This is not to say, however, that I agree with your cardiologist who said you were simply out of shape. Clearly there is more to it than that, and the cardiologist is full of ****. Are you also pale? Bowel movement immediately after eating is known as the "gastro-colic reflex" and is nothing to be concerned about. Constant hunger is more unusual for someone who is not dieting, so that's something I would ask to be evaluated. Are you also constantly thirsty? How could you have eaten only at night if you were constantly hungry? I'm afraid I can't find the Tagamet dosage, but you can probably find it through the following medical journal citation: Goldstein JA (1983). Cimetidine and mononucleosis. Annals of Internal Medicine 99(3):410-411. Good luck in NYC tomorrow.
    Anonymous 42789 Replies Flag this Response
  • Alright, good to see that you are really not worried. :-)Bowel movement immediately after eating is known as the "Gastro-colic reflex" and is nothing to be concerned about. In fact, many people regard it as a sign of an extremely healthy digestive system. Constant hunger in someone who is not dieting is not so healthy, so I would ask to have that evaluated. Are you also constantly thirsty? How could you have eaten only at night if you were constantly hungry?I believe that your perceived thinness could be simply due to lack of exercise. As I'm sure you know, exercise causes muscles to swell and increases circulation to the skin, resulting in a sort of "puffy" appearance. But this is not to say that I agree with the cardiologist who said you were simply out of shape. Clearly there is more to it than that, and he is full of ****.I can't find the Tagamet dose, but you should be able to find it in the following medical journal article: Goldstein JA (1983). Cimetidine and mononucleosis. Annals of Internal Medicine 99(3):410-411.Good luck in NYC today.
    Anonymous 42789 Replies Flag this Response
  • Hey Tim,>You know, lumps on people's bodies aren't all that rare. My brother has a Yes, I know. It's just that the one in my mouth appeared spontaneously it seems, and it doesn't exactly follow the normal pattern of oral exostosises. Normally I wouldn't have paid much attention but after reading case studies of "asymptomatic" presentations of cancers of the jaw (like osteosarcoma), it struck me at how my condition might be the same. >Not being able to exercise can definitely make one's limbs thinner. As I'm Yes, that's something I considered over these past few months. Within the past 2 years, I did a lot of exercising (presumably leading to the "mystery condition" mentioned in your topic) and, even though my muscles shrunk somewhat, I was still somewhat "stuck" in the "overtrained" look. Normally when I hadn't exercised, I did get much thinner. But the issue now is that I'm thinner than I EVER was before. >So it's plausible to me that the thinness you observe is simply caused by a >lack of exercise. This is not to say, however, that I agree with your True, but at the same time it seems a bit odd that I would have looked like X for months with no exercise, and then suddenly started to look like Y for no logical reason. It's like my skin is too thin at certain places where it normally would have been thick. >cardiologist who said you were simply out of shape. Clearly there is more to >it than that, and the cardiologist is full of ****. Are you also pale?Not really, but is there a specific disorder or disease that might be relevant in the event I was pale? As for the cardiologist issue, it's more or less what I thought as well- that kind of explanation might work for a 40 year old couch potato but I'm only 25 and have always been active. >Constant hunger is more unusual for someone who is not dieting, so that's Well I've ALWAYS been like that, for whatever reason, but now adays it seems like I never feel full. >Are you also constantly thirsty? How could you have eaten only at night if >you were constantly hungry?Actually I'm rarely thirsty, though I do make sure to drink the RDA of water anyway. Eating at night...well (at least the way my body works) if I don't eat during the day, I would feel hungry maybe around lunch time, but it would subside and basically disappear entirely...until I ate anything later in which case the entire day's worth of "non-eating" would hit me. >Good luck in NYC tomorrow.Thanks. The ruling was basically that it's not related to the bone swellings, but that I should see a GI specialist and (a different) Infectious Disease specialist. The doctor also mentioned that my thinning doesn't fall in with that of cancer (or AIDS, as both can have cachexia) based on how I look, despite my thinning out from my own normal "healthy" look.
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  • Sorry for the duplication, my posts got held up by the "moderator."
    Anonymous 42789 Replies Flag this Response
  • My message from 3/31 was finally posted, but it's on the previous page because of timing (seems like yours was posted before; maybe less time in moderation). Anyway, another specialist I saw, just as the oncologist I saw weeks ago, mentioned the possibility of the EBV infection, since it's still "active" in light of the recent infection, could still be affecting my health. I don't know...why would I get better after the mono infection and then suddenly have problems 2 months later? Also, I'm wondering about my blood testing being so immaculate- WOULD cancerous things actually affect the blood tests if they weren't advanced/weren't in vital organs? Obviously lymphoma would show up and a kidney tumor might, but what about all of the people who have lung cancer, for example, and who don't have any symptoms or abnormal testing values?
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  • I've asked my dentist friend what he would do for a unilateral exostosis, and I'll report back what he says.One way to determine whether your metabolism is altered is exercise ergometry with expired gas analysis. This is how I learned that my metabolism is almost completely anaerobic when I attempt to exercise. However, the test will only determine whether your exercise metabolism is normal, not why it may be abnormal.It is not at all clear that my abundant exercise, perhaps overtraining, lead to my mystery condition. I include that fact in my summary simply to head off any speculation that I was too sedentary, or as your cardiologist put it, "out of shape." I don't think exercise hurts healthy people, only those with underlying medical conditions.If you were pale in addition to being "thin", it would indicate not only poor circulation to muscles, but poor circulation to the skin. Taken together, those may be indications of vasoconstriction, which in turn can be the body's compensation for low cardiac output. Low cardiac output, by the way, is surprisingly something cardiologists don't even check or care about, but is nevertheless highly correlated with the severity of Chronic Fatigue Syndrome.The advice to see a gastroenterologist and ID specialist seem sound to me. I'd ask the GI specialist about a tapeworm, among other things, to explain your constant hunger. Are you eating regular meals nowadays?
    Anonymous 42789 Replies Flag this Response
  • Hey again Tim,>I've asked my dentist friend what he would do for a unilateral exostosis, and >I'll report back what he says.Thanks so much. I'm particuarly interested if he would recommend a second biopsy. The key issues are that X-rays and CT scans are all totally normal, with no interligament expansion or root destruction, and that there is expansion on both sides of the teeth (outside and lingual) however its asymetric (outside via the molars, lingual via the front and canine tooth). Additionally, my Alkaline Phosphate level is perfectly normal- apparently when you have new bone growing, it is elevated because of excess production. I've considered the possibility of a tumor inside the bone causing the expansion, as did one of the oncologists I saw, but realistically speaking there would have to be some kind of pattern (i.e. symetrical expansion) involved, and there would be changes to the cavity itself because of a tumor pressing or pushing on things. >One way to determine whether your metabolism is altered is exercise >ergometry with expired gas analysis. This is how I learned that my I'll definately look into this as my metabolism has seemingly been altered for years now, yet doctors don't look into the matter further because neither the thyroid or glucose tests indicate any kind of metabolic disorder. >metabolism is almost completely anaerobic when I attempt to exercise. I take it the doctors never found out why you are like this? Have you tried any types of diateary supplements before/immediately after exercising? If it's almost entirely anaerobic, could that mean a deficency of ATP and creatine reserves? If I remember correctly from a college biology class, ATP/creatine phosphate is what the body uses when intense exercise begins, and once that is used up, the muscles start creating lactic acid by breaking down glucose, and the intensity drops significantly (given the inefficency of anaerobic breakdown). I've always wondered if overtraining might have "overtoxified" the muscular system with lactic acid- part of the reason people are told to rest during fitness regimes (IIRC) has to do with letting the body dispose of all the lactic acid. Too much exercise and no break, though, would seemingly create an overload of it.For reference, cancerous tumors actually grow via anaerobic conditions. It raises the possibility of a tumor interfering with exercise because it has infiltrated the body and alters the overall state of metabolism. >It is not at all clear that my abundant exercise, perhaps overtraining, lead >to my mystery condition.From the research I did about overtraining last year, it suggested that the syndrome can produce profound effects on the body (physical, chemical, and emotional) that testing can't necessairly determine unless there is something significant. Out of curosity, did you ever have a testosterone level check? One of the doctors I saw just ordered it. >I include that fact in my summary simply to head off any speculation that I >was too sedentary, or as your cardiologist put it, "out of shape." I don't In my case, I never had any problem lifting weights, and may very well have overtrained back in my first year of college- I got a fever and was exhausted for about two weeks because of my foolish attempt to "mass exercise" before the school year ended. But I went back to normal after and had no problems. Just as you report though, there is almost a total loss of exercise tolerance now however. Arguably this all began for me back in summer 2005 when I was taking collagen supplements as I was told it is good for your skin. The idea of some kind of collagen disorder caused by injesting the product occured (Ehlers-Danlos syndrome for example, as my skin is somewhat more elastic than most people and I do tend to get pressure marks and such on my skin with seemingly no force at all). >If you were pale in addition to being "thin", it would indicate not only poor The thin issue is really fustrating me though. EVERY doctor I go to look at my blood tests, looks at my body, and says "you're healthy". They don't really believe my claims of thinning because I don't look like a typical case of wasting. When I point out the depressions in my hands or arms or chest, however, they just say that it's a bit more noticable than the average person, but that it's nothing. It IS something because it was NOT there before. I literally watched myself thin out over a period of 3 months and saw as these depresions gradually appeared. >may be indications of vasoconstriction, which in turn can be the body's Hmm...I will look into that as well. Do you have low cardiac output BTW?>The advice to see a gastroenterologist and ID specialist seem sound to me. The ID specialist I saw did a thorough evaluation and spent a great deal of time looking over my test results, but ultimately said I am perfectly healthy. He did mention the possibility that the EBV infection sometimes takes an entire year to clear out of a person's system and that my problems could be related to that. But again, I didn't really get an explanation of why it was my body shape returned to normal AFTER the mono infection, but then started to slim down two months later.
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  • Hi again Tim, my earlier post has not appeared yet so if you only see this one, please check back later (though it seems the moderators can hold up the posts for days at times).Anyway, I can't seem to find your topic at the moment but wanted to ask if you have experienced any sort of fasciculations (involuntairy muscle twitching). After my "overtraining" bout last winter and now in the past few weeks as well, I've experienced some random muscle twitching; all over really. In an effort to determine if my "thinning" was neuro-muscular in nature, my doctor sent me to a neurologist who did a series of tests (which hurt; electrocuting nerves and stabbing muscles is NOT a pleasant experience...). Anyway, I am fine neurologically however he mentioned a condition known as "benign fasciculation syndrome". I checked up on it and sure enough, the symptoms seems to be exercise intolerance, muscle cramping, and fatigue. I certainly have had this issue (namely the cramping) for almost a year now and wonder if this might be the cause. What about you?
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  • Mr. Concerned, I'm having very similar symptoms. I've been feeling ill since fall of '06. Check out my post "It's like ***l on earth" if you get a chance. I'm only 25 and I have a family history of heart disease, that's it. I'm getting really frustrated with the doctors. Hope you feel better soon, Ron
    Ron51ca 28 Replies Flag this Response
  • I can't believe every post on this site gets moderated for days. There must be hundreds if not thousands of people posting here. These delays are awfully annoying. Who are the moderators, anyway?You did not answer my question about whether you are currently eating regular meals.For a unilateral exostosis, my dentist friend says "Most always it is a benign thickening of the bone related to stresses in the mouth usually brought on by bruxism. Other considerations are cysts, infection, necrosis, and erupting supernumerary teeth." It seems to me that you have ruled out cysts, infection, necrosis and supernumerary teeth. So is there a chance you are grinding your teeth at night, perhaps as a result of the metabolic changes that have occurred? Would a sleep study be necessary, particularly one ordered by a dentist rather than a general physician? I don't think my friend would recommend a 2nd biopsy.I really think I would give your cancer fears a rest. If anybody should have cancer by now, it would be me, what with my family history and excessively anaerobic metabolism for decades. Put your mind and heart elsewhere!Metabolism is a MUCH broader subject than the thyroid and glucose preoccupations of endocrinologists. They test for thyroid and glucose automatically because they are cheap, simple, low-hanging fruit. Anaerobic metabolism is MUCH less efficient than aerobic metabolism - 18 or more times less if I remember correctly. And yes, that means 1/18 as much ATP is produced anaerobically. Yes, I've tried creatine, but it didn't help. Yes, my testosterone has been checked, and it is sometimes borderline low and sometimes a little above normal. Go figure!I have a friend with Ehlers-Danlos syndrome, which I believe is hereditary and cannot be acquired through collagen supplementation or any other supplement. Joint hypermobility, however, is found more frequently in CFS patients than in the general population. The hypermobility is thought to result from elevations of elastase. The pressure marks on your skin make me think of scleroderma, not Ehlers-Danlos.My cardiac output is spectacularly low, in fact is less than that of the average patient currently hospitalized waiting for heart transplant! It's fairly easy to calculate yours by multiplying your stroke volume (SV) by your heart rate (HR). Assuming your heart rate was not high (>60) due to anxiety during your exam, the product should be no less than about 5 liters per minute.The aftereffects of EBV infection can last a lot longer than a year. In about 5 to 10% of people, it can trigger CFS that lasts a lifetime. So can many other viruses.Yes, in my summary I mentioned that "there is sometimes much twitching in random locations." But I don't regard that as a frequent or incapacitating problem. I have also had an EMG, and I agree that it is one of the most unpleasant tests you can have. Muscle cramping is also a problem for me, but is not central to my disability. Benign Fasiculation Syndrome sounds similar to Chronic Fatigue Syndrome, which is not, as you say, the CAUSE of any disease but rather a collection of symptoms that RESULT from a disease. Do you take my meaning?
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  • Hi Ron,Wow, you're right- the symptoms are rather similar. It's interesting you mention epididymitis- I also seem to have this. At the top part of my right testicle is a small (about 0.2cm) hard cyst or something like that. I vaguely remember feeling it back in high school when we learned about self-examinations in a Human Growth and Development cycle class. Last year, after all of my odd symptoms began, I "re-discovered" the mass and had both my primairy doctor and a urologist examine me. They both ruled it was completely benign, however no ultrasound was ever performed. As for the odd symptoms mentioned, I posted them in another topic, created by the user "tim", who has also posted in this topic. I FINALLY found his topic again (it's many, many pages into this form now):http://forums.wrongdiagnosis.com/showthread.php?t=6628Many of the symptoms he has are symptoms I started experiencing last winter (2006) for seemingly no reason, but possibly related to exercise overtraining. Of random-yet curious-interest is that both he and I took Accutane for acne in the past. Is there any chance you also took it, or took acne medication? As for your symptoms specifically, they are similar. In particular I want to ask about the muscle atrophy issue: How did you "notice" the atrophy? Do you have any soreness or difficulty moving specific muscles, or is it more of a full-body "shrinking"? Do you have any kind of depressions in your figure that appeared since this began? Is one side smaller than the other? Do you have any exercise intolerance? How much weight have you lost since your symptoms began? For example, my hands and fingers are much thinner now, there are depressions near my elbows when my arms are fully extended, my knee caps are far more noticable now because of the lack of fat (muscle?) around them, and my waist line has both reduced along with my torso thinning (and loss of fat/muscle in the pectoral region). Doctor's don't really put much stock into my thinning issue, namely because I haven't lost weight and because I don't show classic signs of disease-related wasting. With respect to your symptoms, I wonder if there is a hormone inbalance going on because of the facial hair changes, the scalp (head) hair changes. An Infectious Disease specialist I saw this past week ordered a Testosterone level check for me- have you also had this just to rule out the possibility? Did anyone order a check for Pitutiary Gland functioning? BTW Tim (if you're reading): you have had many of your symptoms for a long time now: Did you ever looked into the disease known as Phosphofructokinase Deficiency (AKA Tarui's Disease)?It's a Glycogen Storage Disease, of which someone suggested I look into the possibility of Pompe disease, another GSD. Ron, some of your symptoms also seem to fall under either of these categories as well. It's terribly fustrating when doctors don't want to help, much less acknowledge anything is going on. They've tried to give me two different perscriptions for anxiety medications claiming all of this is "stress and tension" related, but it's really not. Unfortunately the medical community is rather close-minded and "by the books", so if Test X shows up normal then they automatically rule out the possibility of Condition Y. Once you have an entire panel of tests that come back normal, then you're more-or-less considered to be a case of anxiety. But the thing is, no one is "normal" and so test results for one person might be in the normal range but still ABNORMAL for them.
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  • Hi Tim; tell me about it: I've now posted two messages in this topic today (one to you, and one the user Ron who recently posted); who knows when they will show up. It seems like sometimes it takes the moderators DAYS to get to the messages. My guess is that there ARE hundreds/thousands of people posting here and dozens (or less) moderators. >You did not answer my question about whether you are currently eating >regular meals.Yes, especially compared to my previous habits. I will force myself to eat when I get up, then mid-day, even if I don't have much of an appetite. Nonetheless, come night time I am still extremely hungry. The thinning phenomenon worsens the next morning, perhaps because I haven't eaten any food for the 8 hours while sleeping. In fact, ever since the exercise intolerance situation began last year, I've found my face, upon waking, somewhat thinner. High blood sugar makes the skin puffy so perhaps that has something to do with it.In fact, it reminded me of something else: when I was basically eating night-time only, I would have TONS of sugar. Tons; I'm talking maybe 100 grams at a time if not more. I've wondered if that might have affected my metabolism but as a glucose tolerance test came back perfectly normal, apparently not. >thickening of the bone related to stresses in the mouth usually brought on This is actually what the oral oncologist had concluded and even went as far as creating a mouth guard for me to wear during sleep. The fact of the matter is that I DO grind and clench my teeth/jaw. My canine teeth are all worn down and some of my other teeth have been affected as well. This has been an issue ever since my treatment with braces (thus about 7 years ago). The oral oncologist noticed that the expansion follows a pattern or sorts with respect to how the mandible would expand in light of excess stress, and mentioned that the muscles on the right side of my mouth are significantly larger than those on my left (excess stress). My only "second guessing" came from the fact that it HAD been 7 years since the grinding/clenching began and I never had a problem. Though perhaps, with all the stress of mono, then second-guessing if it was HIV, and the overall issue exercise intolerance from last year, I was in fact, clenching most of the day, and noticed that it was usually more pressure on the right side. Though of course, the bone masses on my skull would obviously have nothing to do with pressure. >Metabolism is a MUCH broader subject than the thyroid and glucose >preoccupations of endocrinologists. They test for thyroid and glucose Indeed. There are SO many disorders and yet despite this, doctors test for like 3 at most then look at you with disbelief upon a request of a more thorough test panel. Heck, I was referred to an endocrinologist whose office told me "We don't take patients unless they have already been diagnosed with diabetes or thyroid problems." When asked about more specific, unusual endocrine problems the secretairy actually replied, "I doubt you have that or else your doctor would have already discovered it." >The pressure marks on your skin make me think of scleroderma, not Ehlers->Danlos.Hmm...You know some of those symptoms do link up, but my skin isn't hardening. Rather, it seems to be softening instead. Though with respect to Raynaud's phenomenon, I vaguely seem to recall periods where my hands will change colors in cold temperatures. >The aftereffects of EBV infection can last a lot longer than a year. In about >5 to 10% of people, it can trigger CFS that lasts a lifetime. So can many >other viruses.Yeah, it's possible I have that unfortunately (postviral issues) though why it is my body proportions returned to normal after the infection is somewhat of a mystery. And obviously the exercise intolerance and all that started WAY before I ever came bown with mono. >random locations." But I don't regard that as a frequent or incapacitating Oh, nor do I. My twitching is infrequent and seems to occur only when at rest, and after having done exercising recently. >Do you take my meaning?Indeed. It's fustrating to say the least; CFS seems a lot like Overtraining Syndrome on paper: there is no real way to prove it in many cases and so a number of doctors claim they are fake. And of course, just like you say, even being diagnosed with these conditions does absolutely nothing to substantiate WHY they occur.
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  • >Nonetheless, come night time I am still extremely hungry. There's nothing wrong with a bedtime snack. >In fact, it reminded me of something else: when I was basically eating night-time only, I would have TONS of sugar. Tons; I'm talking maybe 100 grams at a time if not more. I've wondered if that might have affected my metabolism but as a glucose tolerance test came back perfectly normal, apparently not. Why were you eating so much sugar?>This is actually what the oral oncologist had concluded and even went as far as creating a mouth guard for me to wear during sleep. The fact of the matter is that I DO grind and clench my teeth/jaw. My canine teeth are all worn down and some of my other teeth have been affected as well. This has been an issue ever since my treatment with braces (thus about 7 years ago). The oral oncologist noticed that the expansion follows a pattern or sorts with respect to how the mandible would expand in light of excess stress, and mentioned that the muscles on the right side of my mouth are significantly larger than those on my left (excess stress). I forget, which side is the exostosis on?>When asked about more specific, unusual endocrine problems the secretairy actually replied, "I doubt you have that or else your doctor would have already discovered it." I think a more truthful answer would have been "if you have that, we don't know what causes it or how to treat it. We get the biggest bang for the buck by treating diabetes and thyroid disorders.">Hmm...You know some of those symptoms do link up, but my skin isn't hardening. Rather, it seems to be softening instead. Perhaps you will want to explore the elastase connection. >Yeah, it's possible I have that unfortunately (postviral issues) though why it is my body proportions returned to normal after the infection is somewhat of a mystery. There are metabolic and physiologic changes that accompany any significant infection such as mono. Fever and vasodilation to your limbs and skin could have caused your proportions to return temporarily to normal. > It's fustrating to say the least; CFS seems a lot like Overtraining Syndrome on paper: there is no real way to prove it in many cases and so a number of doctors claim they are fake. With regard to CFS, there is a substantial body of research that has begun to coalesce into something coherent and provable. The CDC does not yet entirely agree, however.
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  • >There's nothing wrong with a bedtime snack.I know; I often do eat just before going to sleep. But it's not a snack per se; it may as well be a full meal for some people. I can eat 1000+ calories in a single meal and still not feel full. Yes it can take 20+ minutes until the body begins to feel full (which is how overeating occurs) but that point never really occurs; it's like a constant feeling of being hungry most of the time. If that isn't a clear sign of a metabolism disorder, I don't know what is. >Why were you eating so much sugar?Because I use to be able to get "drunk" off sugar (i.e candy); that is to say I would get lots of energy and it would solve the problem of not eating food while at school. I've seemingly built up a tolerance to it in that I don't get the energy anymore really, though again, the glucose tolerance test is normal. On the other hand, I have somewhat of an aversion to sugar now, in that if something tastes extremely sweet it's undesirable. >I forget, which side is the exostosis on?It's on my right side, but on a panoramic x-ray it would be on the left side. The original lump appeared on the gum line (cheek-side) just below Tooth 30, then the area below tooth 31 expanded. There is also lingual side bone expansion on teeth 26, 27, and 28. ALL of the expansion is smooth. >know what causes it or how to treat it. We get the biggest bang for the >buck by treating diabetes and thyroid disorders."Sounds accurate to me. But even when you look at any major disease, there never seems to be any kind of understanding WHY it occurs. Why do people get diabetes? Why do people have thyroid disorders? Why do people develope heart problems? When push comes to shove, the answer is always "it is BELIEVE that X might have some responsibility" but there is no explanation whatsoever. >here are metabolic and physiologic changes that accompany any significant >infection such as mono. Fever and vasodilation to your limbs and skin could >have caused your proportions to return temporarily to normal.Additionally, the idea of my eating relatively nothing for the 3 weeks of mono and then, when resuming a normal diet afterwords, the body proportions seemingly returning to normal for the sole fact that there is all the extra fat, protein, and calories that were missing before. Interesting you mention the issue of fever though- even after the mono infection went away I would often get "mini-fevers", usually at night-they stopped around when my body porportions began to change. >With regard to CFS, there is a substantial body of research that has begun >to coalesce into something coherent and provable. The CDC does not yet >entirely agree, however.My thinking was more along the lines of there not being any kind of clear blood abnormality that indicates the problem. If someone has a glucose level of 300, then it's clear they have diabetes, but if someone just has "mental" symptoms (fatigue for example) and a normal RBC, then it's easy to say "you don't have anemia so it's all in your head."
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