Discussions By Condition: I cannot get a diagnosis.

Please help! Im dying very rapidly and nobody will help

Posted In: I cannot get a diagnosis. 65 Replies
  • Posted By: SleepingDeath
  • March 22, 2009
  • 04:57 AM

(This is going to be an extremely long post, but please read it I need help saving my life)

Hi.... im a 27 year old male. All my life I have travelled and been happy... illness free. Until awhile ago.

What I thought was a common flu or cold has destroyed me. these are the symptoms followed up by background info:

Symptoms:
----------------------------------
Fever

Weakness

A little larger than normal lymph nodes

Headaches. They lasted for almost 4 days at a time and pretty much disabled me

Joint pain/swelling------------------------------------

that lasted awhile, until I developed more symptoms ontop of those:

-------------------------------------Slight anemia. VERY SLIGHT

Fast heart beat, when I lay on my right side my heart beats so ******n the left side that the whole left side of my body PULSES. same thing happens to my right side if im on my left side.----------------------------------
Those symptoms went on for awhile and then more developed:

-----------------------I can't stand or walk without help. I fall over (suggested to be vertigo)

Extreme fatigue. So bad that when my boss came to my house to tell me that I had lost my job, I heard him but didnt care. I just wanted sleep. I sleep for almost days at a time. the longest has been almost 40 hours of straight sleep.

White film on my tongue that never goes away. doctors said it was "Thrush"-------------------------

Background:

I travelled a lot. I have gone to almost any place you can name, Austria, Jamaica, China, Japan, Africa and Costa Rica.

Because of my travels..... every doctor I go to doesn't know how to help me. They have no idea where to start.

I have been sent home countless times even though I look like the living dead, Cant walk without help, Sleep for days straight, strange heart symptoms, anemia and all that other crap.

A couple of nights ago, was the last straw. I woke up at 5:00 am. The whole time I was awake my leg felt like it had insects crawling under my skin.

(dont read this part if you have a soft stomach)

I was so angry... so fed up... I took a knife from my kitchen and actually gashed my leg open. I DONT KNOW WHAT IM DOING ANYMORE

I didn't do serious damage to myself. But thats not the point. The point is im going INSANE. The fact that I cut my leg open looking for insects under my skin is just hard proof that I am going insane... and I am dying.
The doctors are not helping, they are treating the symptoms. which isnt doing anything.

I don't want to keep going like this.... I need some answers or else im just going to give up forever.

Reply Flag this Discussion

65 Replies:

  • There is sufficient evidence here to suggest health anxity and neurosis and although the symptoms being described are quite real to you, they do not point to any type of pathology and certainly not of the level that would be characterized as life-threatening. Let's take a closer look at your symptoms: Larger than normal lymph nodes would be a highly subjective opinion because you are not measuring it against any type of standard. The size of lymph tissues vary slightly between people and positive or swollen lymph nodes demonstrate certain characteristics other than size. I'm going to call this one a normal variant for the time being. Headaches occur very frequently among most people and can result commonly from either stress-related factors, vascular circumstances, or even both. Migrainous syndromes can last for several days as well. Joint pain can also occur for many reasons that do not constitute disease and although you're young in age, tension can play a major role in the sensation that joints are stiff and painful. Sleeping a great deal with a sedentary lifestyle, absent sufficient exercise, will also produce stiffness of the joints unrelated to disease. You mention very slight anemia and again, I must tell you here that there are many factors unrelated to disease that can result in minor changes in red blood cell levels or production and more central to the issue would be the type of anemia you are describing. There are about 400 different types that are divided into two basic categories of nutritional and non-nutritional. Specifically what type of anemia are you reporting? As for your heart rate changing with body position, it's very important for you to realize that this happens to all people and does not constitute a sign of disease at all. Changes in body position relative to gravity cause factors of mild compression which increase sympathetic nervous tone, resulting in increased heart rate. It's that simple. The constant white appearance of your tongue is far less likely in this case to be thrush, but rather something called geographic tongue that is quite chronic and results from mouth-breathing while asleep. It is regularly seen in persons who are hypersomnelescent. In fact, to determine whether it is actual thrush, which I doubt, you can swish a tablespoon of regular white vinegar in your mouth for a minute or two over the next day or so and if indeed it is thrush, it will disappear. Also, exotic travel is not a direct equivalent with contracting some type of exotic or rare disease. People travel the globe constantly and in taking the normal precautions of immunization, there is nothing to worry about in that regard. I see nothing of your symptoms which would even remotely characterize it as a potential disease contracted from abroad. Formication is the term used to describe the sensation of insects crawling under the skin and again, can occur in the presence of stress among other things. Using a knife to "gash" your leg to determine the actual presence would suggest irrational behavior more akin to borderline personality disorder and histrionic features. Again, there is nothing at all of your symptoms that would even remotely indicate that your life is in peril and based upon your posting, my suggestion is to seek a referral to a professional who can help you identify faulty beliefs and thinking patterns which have led you to such a dire point. It's critical to understand that physical symptoms can and do occur as a direct consequence of emotional or psychological difficulty. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • (This is going to be an extremely long post, but please read it I need help saving my life) Hi.... im a 27 year old male. All my life I have travelled and been happy... illness free. Until awhile ago. What I thought was a common flu or cold has destroyed me. these are the symptoms followed up by background info: Symptoms:----------------------------------Fever Weakness A little larger than normal lymph nodes Headaches. They lasted for almost 4 days at a time and pretty much disabled me Joint pain/swelling------------------------------------ that lasted awhile, until I developed more symptoms ontop of those: -------------------------------------Slight anemia. VERY SLIGHT Fast heart beat, when I lay on my right side my heart beats so ******n the left side that the whole left side of my body PULSES. same thing happens to my right side if im on my left side.----------------------------------Those symptoms went on for awhile and then more developed: -----------------------I can't stand or walk without help. I fall over (suggested to be vertigo) Extreme fatigue. So bad that when my boss came to my house to tell me that I had lost my job, I heard him but didnt care. I just wanted sleep. I sleep for almost days at a time. the longest has been almost 40 hours of straight sleep. White film on my tongue that never goes away. doctors said it was "Thrush"------------------------- Background: I travelled a lot. I have gone to almost any place you can name, Austria, Jamaica, China, Japan, Africa and Costa Rica. Because of my travels..... every doctor I go to doesn't know how to help me. They have no idea where to start. I have been sent home countless times even though I look like the living dead, Cant walk without help, Sleep for days straight, strange heart symptoms, anemia and all that other crap. A couple of nights ago, was the last straw. I woke up at 5:00 am. The whole time I was awake my leg felt like it had insects crawling under my skin. (dont read this part if you have a soft stomach) I was so angry... so fed up... I took a knife from my kitchen and actually gashed my leg open. I DONT KNOW WHAT IM DOING ANYMORE I didn't do serious damage to myself. But thats not the point. The point is im going INSANE. The fact that I cut my leg open looking for insects under my skin is just hard proof that I am going insane... and I am dying.The doctors are not helping, they are treating the symptoms. which isnt doing anything. I don't want to keep going like this.... I need some answers or else im just going to give up forever. Wow I am sorry for all you are going thru. More info is needed - have you been seen by an infectious disease specialist? Have you had blood tests, stool tests done to rule out parasites, and other pathogens? When exactly did this flu start? Can you remember where you were just prior to your symptoms developing? How were your treated for this - were you prescribed antibiotics? What meds are you currently taking - please list all of them? Do you drink, smoke, or take recreational drugs? How are your stools? Do you have constipation or loose stools? How often are you waking up at night to urinate? Do you have shortness of breath or asthma? Do you have chemical/fragrance sensitivities? Where do you live now? Sorry for so many questions, but if you could please answer all of them it may be helpful/ Best wishesDOM
    acuann 3080 Replies Flag this Response
  • CottleMD, I don't mean to be rude but if you think this is all in my head then you need to reread my post several times. I have had countless tests that all point to me having a real illness (ill get to that in my reply to Acuann) Wow I am sorry for all you are going thru. More info is needed - have you been seen by an infectious disease specialist? Have you had blood tests, stool tests done to rule out parasites, and other pathogens? When exactly did this flu start? Can you remember where you were just prior to your symptoms developing? How were your treated for this - were you prescribed antibiotics? What meds are you currently taking - please list all of them? Do you drink, smoke, or take recreational drugs? How are your stools? Do you have constipation or loose stools? How often are you waking up at night to urinate? Do you have shortness of breath or asthma? Do you have chemical/fragrance sensitivities? Where do you live now? Sorry for so many questions, but if you could please answer all of them it may be helpful/ Best wishesDOM I have been seen by a Infectious disease specialist, He ordered a stool test which came back negative for everything. Though he noted it is very unusual the way I only poo once a week. My stool is sometimes a very DARK red or maybe black color. The flu symptoms started about a year and a half ago, when these symptoms started developing I was just home from vacation (went to Africa and Austria). I was not treated for the Flu like symptoms because I didn't go to the doctor. Im the type who gets a flu or cold and just pushes through it. I am currently taking Tylenol 3 for the headcahes, extreme pain and some of the other symptoms, other than that im not on anything. Thier plan is to wait and see what happens, that prescribe drugs accordingly. I dont drink smoke or take any recreational drugs. My stools are extremely dark red or black most of the time, and I only poo once a week. I wake up during the night and day constantly to urinate. Yes I have very bad shortness of breath, doing anything makes me wheeze. I didnt think anything of it though... I thought its because ive been laying around for so long. I have no chemical/fragrance sensitivities, or allergies. Right now I live in Canada, Ontario. I hope this information has helped
    SleepingDeath 9 Replies Flag this Response
  • Has your physician ruled out Chronic Fatigue Syndrome??? If not, you may want to suggest it to your physician. Chronic Fatigue Syndrome (CFS) has a sudden onset. It is accompanied with flu-like or cold-like symptoms, such as those that you were explaining. In addition, people with CFS also experience:- Swollen lymph nodes in the neck- Headaches that change in persistence and severity- Joint pain that may or may not be accompanied with swelling of the joints- Fever- Severe Fatigue that is debilitating (People suffering from CFS usually lose job as result)- Unrefreshing sleep**ALL SYMPTOMS MUST PERSIST FOR 6 MONTHS BEFORE PHYSICIANS CONSIDER THIS**Rare Symptom:- Muscle weakness, to the point of not being able to walk*CFS may or may not be associated with cardiac issues such as those you mentionedAs for your tongue, you may have geographic tongue, which is caused by sleeping with your mouth open. Now, onto the time when you sliced your leg open- people with CFS often experience physcological effects due to the fatigue levelsAlthough the cause of CFS is unknown, scientists believe that people contract it from a possible virus or they are born with the genetics for it and something triggers it. I hope that this helps. Below, I have copied the following websites regarding CFS if you would like to read up on it. http://www.cdc.gov/CFS/http://www.emedicinehealth.com/chronic_fatigue_syndrome/article_em.htmhttp://www.merck.com/mmhe/sec25/ch306/ch306b.html
    Anonymous 42789 Replies Flag this Response
  • Has your physician ever suspected Chronic Fatigue Syndrome (CFS)??? If not, I think that is what you have. Based on the symptoms that you have been describing, CFS fits nearly all of them. CFS is accompanied by cold-like and flu-like symptoms, i.e. swollen lymph nodes, fever, sore throat. Here are the most common symptoms of CFS after the initial symptoms are present:- Persistent Fatigue (debilitating and unrelated to exertion)- Unrefreshing sleep- Muscle Pain- Joint Pain (may or may not include joint swelling)- Headaches (Severity increases as well as persistence and duration)- Sore throat (Frequent or recurring)- Tender lymph nodes (Swollen or enlarged) Some of the symptoms that you have been experiencing are some of the less common:- Muscle weakness (quite rare) ***ALL SYMPTOMS MUST BE PRESENT FOR AT LEAST 6 MONTHS AND MUST NOT HAVE PREDATED THE INITIAL ONSET OF YOUR SYMPTOMS*** ****All other similar diseases/disorders must be ruled out before physician will consider CFS as the cause**** As for you cutting your leg open, it is quite common for people with CFS to become so tired that they are unaware of what they are doing. CFS also takes a toll on people metally. Also, the white spots/patches that you were describing on your tongue are most likely to be geographic tongue, which is caused by sleeping with your mouth open. I hope that this helps in your diagnosis. If you are interested, you may find the websites below informative and useful. These are where I got all my information from: http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome http://www.merck.com/mmpe/sec22/ch334/ch334b.html http://www.cdc.gov/CFS/
    tryingtohelp24 1 Replies Flag this Response
  • No offense taken. I've been a practicing physician and specialist for more than 40 years and if I suspected that you had anything life threatening, I would have certainly told you so. Again, it's entirely possible to have very real physical symptoms with no underlying disease. Realize that if you are constipated or only experiencing a bowel movement one a week, then subsequent pressure against the bladder wall can cause you to urinate more often. Stool that is red in color would most likely be from ingested food products and very dark stool is likely due to the extended periods between bowel movements. Melana stools where blood is present cause more than just changes in color. If an occult blood screen is negative, then the change in stool color or frequency is unremarkable. You're not dying and I see no pattern in your symptoms that would suggest underlying disease. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • I wanted to add that Infectious Disease specialists are the WORST offenders when it comes to missing chronic Lyme. I saw one with a CDC positive Lyme and a positive babesiosis. He refused to treat me for either. Join Lymenet or CanLyme (above)! I agree that a lyme literate doctor would be helpful to rule out this disease. My friend had Lyme in the 80's, undiagnosed, and her main complaint was horrible and incredible fatique. It's often missed in tests. DOM
    acuann 3080 Replies Flag this Response
  • CottleMD, I don't mean to be rude but if you think this is all in my head then you need to reread my post several times. I have had countless tests that all point to me having a real illness (ill get to that in my reply to Acuann) I have been seen by a Infectious disease specialist, He ordered a stool test which came back negative for everything. Though he noted it is very unusual the way I only poo once a week. My stool is sometimes a very DARK red or maybe black color. The flu symptoms started about a year and a half ago, when these symptoms started developing I was just home from vacation (went to Africa and Austria). I was not treated for the Flu like symptoms because I didn't go to the doctor. Im the type who gets a flu or cold and just pushes through it. I am currently taking Tylenol 3 for the headcahes, extreme pain and some of the other symptoms, other than that im not on anything. Thier plan is to wait and see what happens, that prescribe drugs accordingly. I dont drink smoke or take any recreational drugs. My stools are extremely dark red or black most of the time, and I only poo once a week. I wake up during the night and day constantly to urinate. Yes I have very bad shortness of breath, doing anything makes me wheeze. I didnt think anything of it though... I thought its because ive been laying around for so long. I have no chemical/fragrance sensitivities, or allergies. Right now I live in Canada, Ontario. I hope this information has helped You need a good quality PROBIOTIC to help with your constipation. This can be found at any good healthfood store or online thru vitacost.com You need to also slowly add more fiber to your diet. I still question the stool test that was done - was it done over a several day period? Did you have to put several samples in different vials and freeze or refrigerate them? Since you are not getting any definitive answers from your allopathic docs, have you considered a more holistic approach and visited a naturopathic doc, or Oriental medical practitioner? Often they can help where allopathic medicine cannot. I am a Doctor of Oriental Medicine and have helped countless people with migraines, lung disorders of all kinds, CFIDS, fibro, and much more. I think it would really help you. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Sounds like Lyme to me. It is often misdiagnosed, even in blood work. But it is not life-threatening, and you should tell yourself that. Indeed, by BELIEVING that you are dying is merely causing further suffering. Always remember that the mind is a very powerful tool, and it can wreak havoc on physical health/symptoms too.
    NeverGiveUpBoy 26 Replies Flag this Response
  • HiWell you said you had been to Africa so I am thinking zebras here and maybe you should look at the wrong diagnosis list of symptoms for sleeping sickness. Did you go where there might be tsetse flies?Headaches, swollen nodes and sleeping a lot all symptoms you have. The cure used to be nastier than the disease but I think they may have developed a new treatment.best wishes for better:cool: health
    chrismia 159 Replies Flag this Response
  • HiWell you said you had been to Africa so I am thinking zebras here and maybe you should look at the wrong diagnosis list of symptoms for sleeping sickness. Did you go where there might be tsetse flies?Headaches, swollen nodes and sleeping a lot all symptoms you have. The cure used to be nastier than the disease but I think they may have developed a new treatment.best wishes for better:cool: health Hi, I have read everybodys post. Thank you all for your help, I am going to mention ALL of the suggestions in this thread to my doctor. I am very tired and falling asleep even as I type this. So I will be back later to add a lot and hopefully reply to everybodies post. Thank you very much again.
    SleepingDeath 9 Replies Flag this Response
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  • I just wanted to say that no matter what condition you have, remember that every body has an amazing ability to heal, especially when you're young. I can imagine what you are going through. I truly believe that you will get better and you will slowly get back to normal. My heart goes out to you. I am keeping my fingers crossed, good luck! :)
    Felsen 510 Replies Flag this Response
  • My first thought as I read about your problems was "LYME". I practice in Connecticut. You know, as in Lyme, CT. I wasn't going to respond as I didn't really know for sure what is wrong with you, but this disease can manifest itself in various ailments including most of which you complain. There is an antibiotic of choice for this bacteria yet if this is your true problem many of your symptoms may not completely resolve. It seems late in the disease process. Testing is not 100% accurate at this time.
    Anonymous 42789 Replies Flag this Response
  • Red/black stool is usually a sign of Small intestine cancer. But I don't know about the other symptoms, I wish you the best though, and hope you find the answer.
    Anonymous 42789 Replies Flag this Response
  • Can I just say, I am not a doctor... this is only from personal experience, you said your slightly anaemic, well that may be why you felt you had insects crawling in your legs. When I was pregnant, my iron levels were low and it can cause restless leg symdrome, I literally couldnt sit still, my legs irritated me and felt exactly like you said and I felt like chopping them off! Seems funny now but god bless those iron tablets! A couple of days of those and it went away.
    Anonymous 42789 Replies Flag this Response
  • The symptoms you describe are very similar to what my life has been like for many years. I have a diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. I also take pain killers daily but do know that as debilitating as these syndromes can be they will not be fatal. There are no medical tests that will show FMS but the doctor can check for certain tender points.Do a web search to see a list of symptoms. www.fibrohugs.com and http://www.fmnetnews.com/ are good places to start.What is Fibromyalgia? Do you have pain from head to toe? Are you tossing and turning throughout the night, unable to sleep? Do you wake up to pain and a foggy brain in the morning? These are common symptoms experienced by fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS) patients. Learn about symptoms, possible causes, methods for diagnosis, and treatment for fibromyalgia and chronic fatigue syndrome in our Basic Info section.
    Anonymous 42789 Replies Flag this Response
  • Hello again. I worry that someone in this thread mentioned that red/black stools "is usually" an indication of intestinal cancer. If detecting cancer were really only that simple! Only a colonoscopy by a qualified/experienced clinician can rule out cancers of that type. Another person recommended iron supplements. Iron can and will make your stoolsdark and tarry. Maybe you are already taking iron supplements? This would easily explain your red/black stools. One piece of advise for you to take or leave. While everyone here truly cares for you and wants you to get better, most are speaking of their own experiences and problems. Throwing out advise like "usually a sign of cancer" may not be helpful or healthful. Please be sure to research any method(s) you use and advise from doctors at least is grounded in facts and experience. Please continue to post your symptoms because this group, myself included, really would like to try to help you.
    Anonymous 42789 Replies Flag this Response
  • Has your physician ruled out Chronic Fatigue Syndrome??? If not, you may want to suggest it to your physician. Chronic Fatigue Syndrome (CFS) has a sudden onset. It is accompanied with flu-like or cold-like symptoms, such as those that you were explaining. In addition, people with CFS also experience:- Swollen lymph nodes in the neck- Headaches that change in persistence and severity- Joint pain that may or may not be accompanied with swelling of the joints- Fever- Severe Fatigue that is debilitating (People suffering from CFS usually lose job as result)- Unrefreshing sleep **ALL SYMPTOMS MUST PERSIST FOR 6 MONTHS BEFORE PHYSICIANS CONSIDER THIS** Rare Symptom:- Muscle weakness, to the point of not being able to walk*CFS may or may not be associated with cardiac issues such as those you mentioned As for your tongue, you may have geographic tongue, which is caused by sleeping with your mouth open. Now, onto the time when you sliced your leg open- people with CFS often experience physcological effects due to the fatigue levels Although the cause of CFS is unknown, scientists believe that people contract it from a possible virus or they are born with the genetics for it and something triggers it. I hope that this helps. Below, I have copied the following websites regarding CFS if you would like to read up on it. http://www.cdc.gov/CFS/ http://www.emedicinehealth.com/chronic_fatigue_syndrome/article_em.htm http://www.merck.com/mmhe/sec25/ch306/ch306b.html I too are going to say that you could have chronic fatigue syndrome and your symptoms could be part of that. http://wwcoco.com/cfids/bernesx.html (and one can get weird skin sensations with CFS) Ones with CFS often feel so bad that yeah, we feel like we are dying. This is resonable to imagine when once cant even stand up and is sleeping 40 hrs at a time, that just isnt normal! So yeah we get paranoid and desperate. In CFS like the one above quoted, often does start off with flu or cold like symptoms. This is how it starts off in most with it. I thought the above post was a good one but disagree with one thing said, that being that muscle weakness to the point of not being able to walk is rare. I myself would say with my experience of 100's with this illness, would say that muscle weakness that bad isnt at all rare in us. 25% of ones with CFS are bedbound or homebound... not able to walk at all or walk far. So not being able to walk is a quite common symptom with this illness. This illness affects us so greatly that most of us need to go onto disability for it. At times ive suffered so much weakness with it that I couldnt even hold my head up and was struggling to move just a finger! I couldnt even feed myself
    taniaaust1 2267 Replies Flag this Response
  • Look up dengue fever. Did you have a rash? Headache,fever,muscle pain,swollen lymph glands and rash. Black stools are common in dengue hemorrhagic fever, but you don't have all those symptoms. Dengue is prevalent in the subtropics. Have you been to an infectious disease specialist?
    rad-skw 1605 Replies Flag this Response
  • Sounds like you most definitely have Chronic Fatigue Syndrome. I had most of the same symptoms and it took 4 years to get disgnosed. 6 months after that I was diagnosed with Sjogren's Syndrome, which the primary diagnosis, and CFS is secondary. Have them check you for EBV. Seems most people with CFS have chronic Epstein Barr, or mono. If you've had mono anytime in your life, it can come back chronic, which is one of the suspected causes of CFS. I never even knew of a time I had mono prior to the CFS diagnosis. Go to www.cdc.gov/cfs and read everything they have on it.I am a RN, and I recommend anyone having problems getting diagnosed to go to a holistic DO. I went to a variety of 13 MD's who specialize in one thing or another & could not diagnose me. It wasn't until I went to a holistic DO that I started getting diagnosed. They run many different tests that MD's don't. Hope this helps
    AngilT 13 Replies Flag this Response
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