Discussions By Condition: I cannot get a diagnosis.

Please Help...Somebody?...Anybody?...

Posted In: I cannot get a diagnosis. 33 Replies
  • Posted By: HelpinOhio
  • December 21, 2008
  • 11:20 PM

Anybody who reads this and helps out I will be more than thankful to you. You might just save my life. Im 18 years old and a male and I am very sick and cant get a diagnosis. Ive had several of the symptoms most of my life, however most of them came about 6 years ago, and new even worse symptoms have appeared over the past 2 years and ruined the little life I had left. My life and health is in ruins now, I feel like Im dying. I am very sickly and its impossible to explain how bad I feel. Years of my life have been taken away from me, I can never get that back...

To get to the point though, here are my symptoms:

Physical Symptoms: severe fatigue, malaise, pallor, joint pain and grinding, stiffness, muscle aching and easy cramping, severe temperature sensitivity, skin turns white/purple/blue when cold and red when hot, also numbness, very dry skin and hair, flushed face, sunken eyes, teeth look bad yellow/clear because of loss of enamel, photosensitivity, constant colds and sinus infections, pressure in head, headache, constant ringing in ears, constipation, bloating and gas, reoccuring rash on nose and cheeks, lightheadedness, cant breathe, ocassional palpitations, probable stunted growth, low weight with skinny bones, weakness, worsening vision and hearing, need to eat and drink constantly or I feel worse...

Mental/Emotional Symptoms: Mild Depression, moderate anxiety, temporary psychosis, feeling of unreality, like being in a bad dream, everything is passing me by, blunted mood, possible psychic abilities, lack of emotion, lowered inteligence, school grades went from As to Ds, mental fatigue, feeling confused/disoriented, bad memory, no motivation, cant concentrate, mood swings...

Please if you have any idea what can be wrong with me please tell ASAP. I dont want to waste 1 more moment of my life feeling like this because I cant get that back and over 6 years of my life has already been wasted...Ill say more later and answer any questions you have. But PLEASE help me if you can. You may be my last hope...

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33 Replies:

  • What symptoms began 6 years ago?what started 2 years ago?Have you seen a doctor?If so,what did he/she say?Have you had any lab work or other studies?What's this about having to eat all the time?I need much more information than you gave.:)
    richard wayne2b 1232 Replies
    • December 22, 2008
    • 01:28 AM
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  • What symptoms began 6 years ago?what started 2 years ago?Have you seen a doctor?If so,what did he/she say?Have you had any lab work or other studies?What's this about having to eat all the time?I need much more information than you gave.:)6 years ago I got depressed, lost my appetite, and a lot of weight. I got really temperature sensitive and my skin started changing colors like that. I also started to feel very tired and weak all the time a little before this. I was under a lot of stress. During the beginning of this time I got a lot of tests done at the doctors and hospitals. I couldnt tell you what tests, but I got a lot of blood taken and other things. Everything that they could think of. Psychiatrist told me I had depression. Looking back as a smarter person, there was a lot more things going on than depression though. I just had no idea that I wasnt normal at the time, I didnt understand a lot of things. But I was very sick. Before 6 years ago I just had mild symptoms.About 2 years ago things got a lot worse. This is when I actually noticed and admitted that something was wrong and I was very sick. I started having supposedly panic attacks, my heart was beating hard all the time, and most the other symptoms that I mentioned started happening. I got weaker, more fatigue, hard to breathe, its when my joints really started hurting and I noticed that I was really looking bad. My vision started getting worse and my ears started ringing loudly. Feeling like I was in a dream, muscles cramping very easy. Almost all of the symptoms that I mentioned appeared 1-4 years ago and have been gradually getting worse.I got more tests done recently around 8 months ago. I have a few family members with thyroid diseases, celiac, hypoglycemia, and diabetes. I remember being tested for celiac disease, all the thyroid tests, a lot of heart tests, diabetes, hypoglycemia, chest X-Ray, abdomen X-Ray, rheumatoid, full blood count, etc.. Just a lot of tests and labs I cant remember all of them. Anyway all they came up with is low vitamin D and constipation. Ive been taking vitamin D and getting more fiber and nothing has gotten any better. I have to eat every few hours for some reason or else I get light headed and just start to feel very weird. I have to stay hydrated also. I know those are symptoms of diabetes/hypoglycemia, but they tested me for those many times and Im always negative for that. Hope that helped you. I just really need help...
    HelpinOhio 32 Replies
    • December 22, 2008
    • 03:44 AM
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  • time to do research....check dysautonomia, POTS syndrome, Vitamin B deficiency.... Keep us postedPamela
    pamelasmc 82 Replies
    • December 22, 2008
    • 04:13 AM
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  • It sounds as if you've got somr psychological problems,complicated by some physical ones.Are you on any meds?The eating frequently or feeling bad sounds like hypoglycemia.:)
    richard wayne2b 1232 Replies
    • December 22, 2008
    • 00:45 PM
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  • If you can get a blood sugar done while you're feeling bad,and if it's low,we'd really have a starting place.:)
    richard wayne2b 1232 Replies
    • December 22, 2008
    • 01:03 PM
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  • Have you been checked for an autoimmune disease?
    richard wayne2b 1232 Replies
    • December 22, 2008
    • 04:05 PM
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  • These are the only tests/labs I remember specifically getting done: Celiac (twice), thyroid disease (twice and all tests), Diabetes (several times), Rheumatoid arthritis, Chest X-Ray, Abdomen X-Ray, Full Blood count, EKG (several times), 24 hour Holtor Monitor, Mononucleosis.On top of that they tested for many other things that I cant remember. I was very surprised that they didnt find anything. I remember they tested for several other auto-immune diseases but I couldnt tell you which ones. I had a couple diseases that I highly suspected myself, but they tested for most of it. Because of all the symptoms and the rash, I have to consider lupus as a possibility, but lupus is a mostly female disease. I actually had my blood sugar tested while I was feeling bad and light headed (not on purpose), and it still came back negative. Ive been researching for over a year now. Its still a mystery to me, but there is no doubt in my mind that something bad is going on here. I just hope they can figure it out so I wont have to lose more precious time over this...
    HelpinOhio 32 Replies
    • December 23, 2008
    • 01:28 AM
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  • These are the only tests/labs I remember specifically getting done: Celiac (twice), thyroid disease (twice and all tests), Diabetes (several times), Rheumatoid arthritis, Chest X-Ray, Abdomen X-Ray, Full Blood count, EKG (several times), 24 hour Holtor Monitor, Mononucleosis. On top of that they tested for many other things that I cant remember. I was very surprised that they didnt find anything. I remember they tested for several other auto-immune diseases but I couldnt tell you which ones. I had a couple diseases that I highly suspected myself, but they tested for most of it. Because of all the symptoms and the rash, I have to consider lupus as a possibility, but lupus is a mostly female disease. I actually had my blood sugar tested while I was feeling bad and light headed (not on purpose), and it still came back negative. Ive been researching for over a year now. Its still a mystery to me, but there is no doubt in my mind that something bad is going on here. I just hope they can figure it out so I wont have to lose more precious time over this... FIND YOURSELF A LYME LITERATE DOCTOR WHO WILL TEST YOU FOR LYME DISEASE. This must be ruled out! Nearly all of your symptoms sound like Lyme to me.Best wishesDOM
    acuann 3080 Replies
    • December 23, 2008
    • 03:38 AM
    • 0
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  • Please, I still need help. I havent gotten many answers for what could be wrong with me and I really need help. Im afraid I dont have that much time to live. Its getting worse, I feel very sick and like Im losing my mind. Im afraid its going to be too late if I ever figure it out. If I go to the doctor I have to be almost sure whats wrong with me, because my family doesnt have that much money or good insurance. Ive been researching for over a year with no help.If you know anything or suspect anything, please tell me. Please...Im slipping away...
    HelpinOhio 32 Replies
    • January 3, 2009
    • 03:34 PM
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  • I would get tested for Lupus. Men can have this disease. My uncle has it and he is not doing well at all.
    Anonymous 42789 Replies
    • January 3, 2009
    • 07:51 PM
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  • Acuann mentioned Lyme disease. If you have a rash anywhere on your body, she is probably right. Look for it. It would most likely be shaped like a target. Have they done a brain or spine MRI to look for lesions? Also, do you smoke?Maybe its several things. The temperature sensitivity and skin color changes fit Raynaud's Phenomenon. It is a Disorder of the small blood vessels that feed the skin. During an attack of Raynaud's, these arteries contract briefly, limiting blood flow. This is called a vasospasm. Deprived of the blood's oxygen, the skin first turns white then blue. In response to cold or anxiety, these vessels go into spasms, causing pain, the sensations of burning and tingling, and color changes. The skin turns red as the arteries relax and blood flows again. Extremities--hands and feet--are most commonly affected, but Raynaud's can attack other areas such as the nose and ears. Raynaud's phenomenon can occur on its own, or it can be secondary to another condition such as scleroderma or lupus.(This is a mix of information from several sources that can all be found on this website's symptoms page. Just look up Raynaud's Phenomonon for more information)Sorry I can't help more, but I don't know much.
    amayameda 6 Replies
    • January 3, 2009
    • 08:07 PM
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  • Well, a hemoglobin A1C would be a good indicator of glucose control over the past 90 days or less. The adrenal glands respond to stress and/or lower level blood glucose by producing adrenalin and releasing it into the bloodstream. Adrenalin produces symptoms of anxiety, tremulousness, sweating and even in some instances, panic attacks. Adrenalin triggers the liver to release Glycogen (the stored form of sugar). This in turn raises the blood glucose levels. The raised blood glucose stimulates the pancreas to produce insulin. A high output of insulin by the pancreas induces lower blood glucose. This state of lowered blood glucose again induces the Adrenals to release adrenalin into the bloodstream. All of this can take place within the diagnostic range of normal blood glucose and yet produce symptoms that many people mistake for hypoglycemia. Realize that what you're likely experiencing is stress-induced adrenaline production that causes upregulation of glucose metabolism and causes a more rapid turnover of of the cycle described above. Many people who experience stress capable of inducing physical symptoms routinely show up at the doctor's office describing symptoms of hypoglycemia, when in fact the symptoms are due to chronic adrenaline production. The symptoms can include headaches, excess sweating, racing heart, rapid and shallow respiration, anxiety/nervousness, tremulousness, pain in the lower chest or upper abdomen, nausea, musculo-skeletal or joint pain and heat intolerance. When the cycle described above reaches a threshold, the symptoms begin to appear and the affected individual often eats and either sits to rest or lies down, reducing stress levels and consequently adrenaline stimulation. There is typically a washed out sensation that can last for a few minutes to sometimes the rest of the day and in between episodes, the following symptoms can also be experienced: increased sweating, cold hands and feet, weight loss and constipation. It would be a good idea to test your glucose when experiencing the symptoms and I think you'll find it to be within the normal range. This would tend to better support the effects of adrenaline production as a consequence of chronic stress. Relief of the stress will produce a corresponding reduction in symptoms. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 3, 2009
    • 08:24 PM
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  • Acuann mentioned Lyme disease. If you have a rash anywhere on your body, she is probably right. Look for it. It would most likely be shaped like a target. Have they done a brain or spine MRI to look for lesions? Also, do you smoke?Maybe its several things. The temperature sensitivity and skin color changes fit Raynaud's Phenomenon. It is a Disorder of the small blood vessels that feed the skin. During an attack of Raynaud's, these arteries contract briefly, limiting blood flow. This is called a vasospasm. Deprived of the blood's oxygen, the skin first turns white then blue. In response to cold or anxiety, these vessels go into spasms, causing pain, the sensations of burning and tingling, and color changes. The skin turns red as the arteries relax and blood flows again. Extremities--hands and feet--are most commonly affected, but Raynaud's can attack other areas such as the nose and ears. Raynaud's phenomenon can occur on its own, or it can be secondary to another condition such as scleroderma or lupus.(This is a mix of information from several sources that can all be found on this website's symptoms page. Just look up Raynaud's Phenomonon for more information)Sorry I can't help more, but I don't know much.amayameda, thank you for your response. Ive been hearing about Lyme disease a lot lately. It sounds possible so Ill ask my doctor about it the next time I go. I have not gotten a brain or spine MRI yet. Ill look those up. Ive also been thinking of asking to get a brainscan (or CT scan) whatever its called. The only thing I smoke is marijuana, and only a very small amount every few days. It decreases my anxiety slightly for up to 5 days after I smoke, so thats the main reason why I do it. It just helps a little. Ive also suspected Lupus, but Im a guy. Still I might ask my doctor about it next time. Its pretty weird how many of the Lupus symptoms that I have, all the way to the reoccuring rash on face. Right now my face is just red though. I appreciate you trying to help me, thanks.
    HelpinOhio 32 Replies
    • January 3, 2009
    • 09:04 PM
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  • I sure hope you figure it out buddy. Keep us posted, will ya.
    amayameda 6 Replies
    • January 3, 2009
    • 09:11 PM
    • 0
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  • JCottleMD,Thank you for your response.Are you saying that all of my symptoms could be caused by stress? Or just the ones you mentioned? When I went to a counselor they told me I showed a lot of signs of PTSD. I also know I have anxiety and Im stressed and worried constantly. I have no idea how to stop this stress though. I took anti-depressants in the past and they didnt help much so Im not sure what that means. Personally I think I have way too many symptoms for it to be caused by stress. But Im willing to do almost anything at this point. Nearly everything I could change on my own I did, and it didnt help any.What can I do to see if what you say is the case then?Is there a cure for what you are talking about?
    HelpinOhio 32 Replies
    • January 3, 2009
    • 09:14 PM
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  • Okay, I don't advise anti-depressants in this instance and concur that they would be of no benefit. Additionally, if there are environmental circumstances that precipitate a significant proportion of the constant stress, then no amount of medication can overcome it. As stated earlier, I think it's wise for several reasons for you to obtain the A1C so you can determine that blood glucose levels are either contributory or not. The fact that you were previously tested would tend to make me think that your A1C and fasting glucose would be entirely normal. May I ask what led your counselor to believe that you suffer from PTSD? As for curative factors, realize that what I believe you are suffering from is a somatoform disorder, wherein stress is causing up-regulation of adrenaline production as discussed in my original response, together with other somatic features of an intense anxiety disorder. Many, many patients who fall into the category of the inability to find a diagnosis in the presence of a vast number of symptoms and negative test results are experiencing physical symptoms in the absence of underlying disease. People are socially trained to make the direct connection between physical symptoms and physical disease and this can be quite misleading under certain circumstances. It is always a wise idea to be initially evaluated to rule out the characteristic underlying causes for such symptoms, but in the presence of repeated negative results, it must be accepted at some point that a somatoform disorder may be responsible. Treatment is certainly available, but I will be just as quick to inform you that competent resources with a good amount of experience and success in dealing with such disorders is not all that common. It takes a good deal of experience to understand how the psychological factors are associated with the physical symptoms and the dynamics related to successful treatment. Although I'm an old allopathic doctor and not necessarily an expert in psychology, I have observed good results with cognitive-based therapy wherein errors in thinking patterns can be altered to produce changes in perspectives that have been damaging. It can sometimes be combined with short-term therapy with anxiolytics if necessary, but I caution that short-term, meaning 12 weeks or so, would be the outside target with the greater focus upon using the cognitive or other therapy platform to yield the more lasting positive change. Lastly, realize that a vast range of physical symptoms can be induced by stress and certain disorders such as anxiety or panic disorder. Again, several tests mentioned that would rule out hypoglycemic episodes would be advisable. Beyond that, I would suggest treatment as described above to determine if any positive change is experienced. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 3, 2009
    • 10:31 PM
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  • JCottleMD, thanks again for the reply.Ill try to look further into what you are talking about. The test with the glucose Im almost positive Ive already had done. Ive been tested for both Diabetes and Hypoglycemia (and related) several times. Just to mention something if it means anything, I always black out when blood is taken. The last few times Ive taken blood I had to lie down so I wouldnt black out. If that means anything.The Counselor I was going to mentioned that a lot of my symptoms sounded like PTSD. I can remember I said I experienced: scary and very disturbing thoughts, being scared and carrying weapons for protection, being very paranoid, cant concentrate, worrying constantly, always on edge, feeling helpless, night terrors, Insomnia and cant sleep in the dark, bad memory, nervousness. Things like that. Ill look into what your saying but its still hard for me to even consider that what Im experiencing is a result of something mental. I didnt think anything mental could cause your skin/hair to be excessively dry, for you to look pale and sickly, for your skin to change colors according to the temperature, have constant loud ringing in ears. Im willing to consider anything though so I will look into it. I really just want to get on with my life. I havent really honestly lived for one moment in the past 6 years. Add to that the past 1 1/2 years Ive felt like Im dying. Im past frustrated. Thanks for your response again though.
    HelpinOhio 32 Replies
    • January 3, 2009
    • 11:40 PM
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  • blacking out or fainting when having blood drawn is quite common and is due to a vasovagal response, where there is a sudden drop in blood pressure and perfusion to the brain is briefly lowered. The consequence is syncope, or fainting. It would not be associated with your other problems. I'm curious that you state you remember describing certain characteristics to your counselor that caused them to consider PTSD. Do you not presently experience the same issues with precise clarity? In other words, has anything changed from what you formerly described to your counselor and the kinds of thoughts you have presently? Are you worse now than when you were first evaluated or better? Is there a precipitating event of 6 years ago that you can recall wherein the symptoms started soon afterward? Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 4, 2009
    • 01:00 AM
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  • I just came across this thread and when I read your symptoms I can relate to most. I have Sjogren's Syndrome. Also, rheumatoid arthritis and hypothyroidism. The changing color of your hands is a symptom of Raynaud's. These are autoimmune diseases. I had a lip biopsy to diagnose the Sjogren's. It is your body attacking the moisture producing glands, Eyes, mouth, etc. It also affects your mood. It is mostly female too like Lupus but I know some men with this disease.Look it up at the Sjogrens Syndrome Foundation website. Good luck and hang in there.
    Anonymous 42789 Replies
    • January 4, 2009
    • 01:15 AM
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  • listen to classical music :D good luck.PS: Notice your breathe. DON't use much computer, television. Social with your family. Tell jokes...try to find something fun to do. Believe this:keep your mind clean, if there are something that want to harm you, it will be successful if you think about it too much. :D. You may need to change place to live. Maybe there will be some good things. GOOD NIGHT SLEEPs are very important!!!gOOD luck :D
    Anonymous 42789 Replies
    • January 4, 2009
    • 01:46 AM
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