Discussions By Condition: I cannot get a diagnosis.

52 weeks of ***l

Posted In: I cannot get a diagnosis. 156 Replies
  • Posted By: lostandscared
  • February 8, 2009
  • 08:47 PM

I'll be short and to the point. im a 30 year old male..i got sick back in february of last year/ it all started with a dizzyness.which lead to weakness.which lead to being bed ridden and so much pain..during that time i been to every hospital and now i owe 1/4 million dollars in bills .which is the least of my worries..my worry is that im very sick.and i think i do have cancer.you can not be this sick without thinking that. i was admited in a local hospital where they told me everything must be in my head,. and im a headcase. which is far from the truth. i was sick. very sick.. they decided to put me in the mental part of the hospital.and i was so sick i dont even remember much. just when they were ready to get me out of there. my lungs collpased. and i had blood clots in my lungs.. well those were taken care of and im on coumiden. i live at home with my mom. and i dont leave the house cuz of this illness.doctors will not take this to the next level.. last time i demanded a biopsy. my doctor laughed at me and said a biopsy of what.. i said anything. i need to know. cuz frankly i care if i have it. but i would also not like to suffer day in day out.. i cry myself to sleep. without a diagnosis. i cant get propper pain treatment..and support. my dad thinks im a nut who is faking it. only my mom knows how sick i really am..im weak im dizzy im hurting in pain. and i suffer 24/7... and im out of options. someone out there please. please help me :(

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  • Sorry i can not help you with your problem, but for anyone to help you, you need to list all your symptoms. Where is your pain & what tests have been done ? I dont think that a biopsy can be done at random, there would be a series of tests & maybe signs of enlargment or swellings first of all to give a direction on where to look. I can understand your destress but you have to start at the beginning & keep a clear head, deal with one thing at a time. I wish i could help you more, i'm sure others will speak to you soon. Best wishes :)
    Tootsie 628 Replies
    • February 8, 2009
    • 09:59 PM
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  • My symptons are pain.terrible lung pain,,pain everywhere from my face and jaw to my finger tips.my throat, my back. my legs.my arms. my shoulders...Awful weakness...i am almost bed ridden. but i try not to laydown only when i sleep..terrible tmj dissorder of my jaw..im always dizzy. i live life in a slow motion fog..if i drive in a car. i get so sore..i moan all the way to my destination..my lungs ache the entire way...the test i have done that i know of arecamara down my throatmri ct scans of head and chest and abX rays of my back Spinal tapim not sure what bloods test. but i heard a cd8 cd9 test should have been done. and i dont think it was..do you know anything about this test.my mother takes care of me and my doctors appointments..everything is just so hard to do including normal things like showering. and walking.any help any advice would gladly be appreaciated
    lostandscared 34 Replies
    • February 9, 2009
    • 03:18 AM
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  • Okay, well something i can talk to you about is the facial pain, I suffer with TN "Trigeminal Neuralgia" not quite the same as TMJ but the facial pain is soul destroying, believe me the pain is that bad that you do think its going to kill you but i have lived with it for 12yrs now, It is known as the worst pain known to man, so i fully understand your distress. A biopsy would not have been possible in my case, as where would they do it ?! It is the trigeminal nerve that is the problem which is most likely the same nerve pain you are suffering. Your other symptoms i dont know about, other than a lot of medication they give me caused similar problems. I also know that with TMJ the pain can be continual, mine wasn't but the effects of it took over my life for quite a few years, i'm on top of it now & stopped letting it control me.....(there are ways this can be done) Are you on any medication ? if so list all ? I'm sorry, there is quite a lot i could talk to you about, but alas i have to go to work & i wont be back home until next Friday. There are good people on here, & i trust that they will help you where they can, especially in areas that i can not. I'll check back next Friday to see how you are. One tip for you & i'm saying this to help you. The more frustrated you get & mentioning the word "Cancer" will most likely rub the Doctors up the wrong way, therefore they may take the angle "its all in your head" You need to be telling them your symptoms & how it is effecting your everyday life, you need the Doctors on your side. Work with them, I went around & around in circles before I got a diagnosis and my Doctors where on my side. If this all stems from nerve pain, there is no blood test or biopsy that will confirm this. A visit to your Dentist is also important, tell them what is happening but please do not mention what you think it is. Also, again this is from experience, the more stressed you get over this, believe me, this will increase your pain. There may be more going on, but i cant help you there, this is the only bit i do know, but whatever it is, this bit is still relevant due to the facial pain. Best Regards :) remember i cant reply again until Friday night.
    Tootsie 628 Replies
    • February 9, 2009
    • 06:55 AM
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  • Oh one other thing, you may get some idiotic replys & diagnosis here, so be aware & dont take all on board, as some spam everyone that comes along with their scare mongering. :eek:
    Tootsie 628 Replies
    • February 9, 2009
    • 07:01 AM
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  • Im only on coumiden.when my jaw pain gets bad i suffer to a point i want to die..see this is where i went wrong i think i was to truthful with doctors i told them all this. i told them about cancer. and about my pain is so bad i want to kill myself.. and its the truth.,., im not a nut. im not crazy. i graduated with a 4.0 top of my class and nothing to be depressed about in life but this illness...when my pain gets bad ..what im about to say is sad.but last time my tmj went through the roof.and my lungs and shoulders were killing me and doctors gave me naproxin which i cant even take on coumiden.. my senior age mother went in a terrible neighborhood for her son and bought me pain medicine.this is what we go through. when i wrote its been ***l i really do mean it.i am seriously living a true and total nightmare on earth.If doctors told me tommorow i have 3 months to live im dying of cancer i wouldnt be shocked. id say i know..and i do know.. im not sick i dont have a cold.. Id actually be happy they diagnose me,cuz right now i suffer day in day out.and its to a point im out of answers. me and my mom are totally out of answers.and about my medication. im on coumiden.. thats all.and now and than vicodin..but that dont even touch tmj pain or my other pain. but its better than over the counter tylenol at this point
    lostandscared 34 Replies
    • February 9, 2009
    • 07:23 AM
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  • Some reason my post didnt go through. i wrote i am only on coumiden right now..my pain is everywhere. from my tip of my head to my toes.. mostly in my back.arms shoulders legs. neck
    lostandscared 34 Replies
    • February 9, 2009
    • 02:49 PM
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  • I assume you have been to a hemotologist. Did they test as to why you developed blood clots? I have a patient who just last week was diagnosed with Factor V leitan...it's rare and genetic, but can cause blood clots. There are other hemotological disorders, some genetic, that should be ruled out. Where do you live? Best wishesDOM
    acuann 3080 Replies
    • February 9, 2009
    • 02:56 PM
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  • Thats something my doctor never told me was why they were casued... as for the car giving out weird vibes to make me hurt..well i was just using that illistration to tell you how bad i hurt.that i can hardly drive in a car..i woke up today screaming in horrific pain from my tmj.. it hurts so bad i want to pull my hair out of my head..my body is so much in pain i have no medicine.becasue i never been diagnosed with nothing.. im totally lost as to what to do now :( anyone that helps me would be forever in my debt
    lostandscared 34 Replies
    • February 9, 2009
    • 03:05 PM
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  • In other words. can you guys put yourself in my shoes. picture this for a minute you wake up oneday out of the clear blue and get dizzy..you get all the symptoms i listed above.you hurt everyday and doctors tell you to get mental help.every m.d. you go to says they cant find nothing. all test come back negative..but everyday you get worse. more pain more suffering.to a point your mother has to whisper to you cuz even your ears are sensitive.plus im so sensitive to light.what do you do when youre out of options?when every hospital tells you nothing and every m.d. says its in your head?i even had doctors say "why dont you work".. and i tell them work? .i cant even leave my bed im in so much pain and weakness.they just say youre 30. you need to take a multi vitimin.and get back on track..its a total and utter joke!!
    lostandscared 34 Replies
    • February 9, 2009
    • 03:35 PM
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  • In other words. can you guys put yourself in my shoes. picture this for a minute you wake up oneday out of the clear blue and get dizzy..you get all the symptoms i listed above.you hurt everyday and doctors tell you to get mental help.every m.d. you go to says they cant find nothing. all test come back negative..but everyday you get worse. more pain more suffering.to a point your mother has to whisper to you cuz even your ears are sensitive.plus im so sensitive to light.what do you do when youre out of options?when every hospital tells you nothing and every m.d. says its in your head?i even had doctors say "why dont you work".. and i tell them work? .i cant even leave my bed im in so much pain and weakness.they just say youre 30. you need to take a multi vitimin.and get back on track..its a total and utter joke!! Again, where do you live? Acupuncture and Chinese herbal medicine often helps when you have no other allopathic solutions. Please consider it. Best wishesDOM
    acuann 3080 Replies
    • February 9, 2009
    • 08:41 PM
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  • Acupuncture? Im not sure if most of you know how bad off in health i really am.. i hurt so bad my mom cant even hug me cuz the pain is so terrible.and you want me to shove needles in my back. i have trouble leaving my bedroom. but you want me to make appointments for this? everything i do is really really hard.cuz im very sick..Im from michigan,near detroit
    lostandscared 34 Replies
    • February 9, 2009
    • 08:53 PM
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  • And like i said in the opening thread.im out of answers and options. financially also.. i have no more credit cards. no more cash. i havent worked in over a year. i dont even have the money to get my levels checked .my blood levels for my coumiden,im totally exausted from this.im out of answers. i have no 400$ for pain management. i dont have money for Acupuncture...im totally wiped clean.im out of answers? thast why im begging for everyoens help. please someone help me..tell me what my next step should beand before someone says apply for medicare medicade..i have applied for everything.and have been denied over and over again.
    lostandscared 34 Replies
    • February 9, 2009
    • 09:00 PM
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  • Acupuncture? Im not sure if most of you know how bad off in health i really am.. i hurt so bad my mom cant even hug me cuz the pain is so terrible.and you want me to shove needles in my back. i have trouble leaving my bedroom. but you want me to make appointments for this? everything i do is really really hard.cuz im very sick..Im from michigan,near detroit Well, I am certainly sorry for all you are going thru, but if you really want answers I suggest that you calm down and please try not to be rude. I suggested acupuncture because it is often the only treatment that helps many people, and thought if you lived near a major city there may be a school you could go to for reduced rates. There are no TCM schools in Detroit, so never mind. Some clinics offer sliding scale fees. Acupuncture is a ***l of a lot more than "shoving needles in my back". I can't offer you any more suggestions that don't require money and further testing for things such as lyme and genetic testing for clotting disorders. I wish you the best of luck and send you my prayers.Best wishesDOM
    acuann 3080 Replies
    • February 10, 2009
    • 01:09 AM
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  • Sorry if i came off the wrong way.i didnt mean to.im just so frustrated from being this sick ,this long.
    lostandscared 34 Replies
    • February 10, 2009
    • 02:53 AM
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  • Another failed attempt at trying to figure out this thing today.went to another doctor..he said im depressed or fiber myalgia...my aunt had fiber myalgia. she was able to work and be normal. i told him i wanted more test. like a cd8 cd9..he agreed to that. but he said there expensive.once again we struck out. and cost me 90$ for useless information.. im totally exausted from this. i dont know what to do. :( someone please help me.. please ..i beg you...ive taken the lyrica..and there useless. i still cry. i still ache and hurt .i dont understand this :( why cant i get help !!
    lostandscared 34 Replies
    • February 10, 2009
    • 07:40 PM
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  • Another failed attempt at trying to figure out this thing today.went to another doctor..he said im depressed or fiber myalgia...my aunt had fiber myalgia. she was able to work and be normal. i told him i wanted more test. like a cd8 cd9..he agreed to that. but he said there expensive.once again we struck out. and cost me 90$ for useless information.. im totally exausted from this. i dont know what to do. :( someone please help me.. please ..i beg you...ive taken the lyrica..and there useless. i still cry. i still ache and hurt .i dont understand this :( why cant i get help !! Hi Lotsandscared, I'm going to describe my experience. I can't tell from your descriptions if it is a "fit" or not. When I was 39, I went to bed one night more or less normal though I had a series of puzzling symptoms for years and a slow increase in fatigue and headaches. The next morning I woke up with severe dizzyness and vomiting. The vomitting decreased over a few days but was a chronic problem for 16 years. Over the first few days I could hardly crawl to the bathroom. I was totally weak and my muscles hurt like the first days of the flu. The pain in my muscles increased for some weeks and added burning pain to the ther pains. The fatigue was total. I had severe brain fog. It took six months for me to be able to walk as far as 1/2 block. By the end of the first year a complete list of all my symptoms was around 160 in a detailed list. I was diagnosed with depression, fibromyalgia (years later), chronic fatigue (years later) etc but nothing at all tried did any good. Some docs said "You have too many symptoms to be believable" and blew me off with "It's All In Your head". A few said "You clearly have something wrong but I have no idea what it is". Others asked a key question "Why don't you get well like my other patients? What is different about you?". The results were the same though, no effective treatment and searching for another doctor. That went on for 16 years until I found the solution. I went to another new doctor, an internist, and asked him to consider my case all anew, not to even look at all the previous assessments and tests. By this time I had scads of neuropathies that dominated the symptoms which hadn't been present 16 years before. I told him that I wanted his best impressions before I would tell him my vitamins. His diagnosis, B12 deficiency. Then he saw my vitamin list and said the same thing the last half dozen docs had said. "You are taking 1,000mcg of b12 daily, it can't be b12". At this point I knew that there were other forms of b12 rather than the cyanob12 I was taking. I had a blood drawn for a multitude of tests and booked a return visit. Later that day I went to a healthfood store and bought some methylb12. Ten minutes after putting the sublingual under my tongue the lights came on for the first time in more than 20 years and I knew it was a bingo. I had lucked into one of the only 2 brands of methylb12 that turned out to be effective later in a series of tests I ran with myself and 4 others. When I went back to see him 2 weeks later he and the entire office staff could see the changes in me. The differences were very dramatic. It has taken me 6 years and both natural b12s and cofactors to heal and rehabilitate. I am fully recovered except for some of the long term neurological damage from prolonged deficiency. The only blood results that indicated possible b12 deficiency were several "mild" blood cell changes. I can now answer that ever so important question a few honest docs willing to admit that they were stumped asked me, "What makes you different...". Myself and all 3 of my children are unable to convert cyanob12 to methylb12, methylb12 to adenosylb12, adenosylb12 to methylb12 and folic acid to methylfolate. Playing "stump the doc" for 16 years cost me $200,000 in expenses for useless treatments and incorrect diagnosis, tons of side effects and no benefits. It cost me everything important in my life and almost my life itself. I'm the healthiest now I have ever been in my entire life. Starting over at 60 hasn't been a picnic. If this sounds a lot like you come on over to http://forums.wrongdiagnosis.com/showthread.php?p=144438&posted=1#post144438 and look at the reasonably complete list of symptoms which I am about to post anew at the end of the posts. Then read backwards for a few hours and you will see the many varied faces that this deficiency can wear. If you want to try the basic trial not including everything and the fine tuning, but enough to give you an idea if this could work for you, post all your symptoms and tell us about yourself and we will help you get started avoiding the mistakes that could keep it from working for you.
    Freddd 3576 Replies
    • February 10, 2009
    • 10:41 PM
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  • Your symptoms sound alike to some extent.. but what alot of you are missing out on. ..is you lived 16 years like this. i dont see myself living another 6 months this way.. i dont live a normal life..and have a little illness.someone mentioned go try acupuncture or this and that.. the truth is.i can hardly even walk. one sympton i also left out is my muscles are deteriorated..i can hardly lift a fork to feed my face..and the reason i cant walk is. i pulled something behind my leg.my muscles get so weak. in the morning i just want to collapse.. i pulled it out running to the bathroom. now i have a urinal by my bed.. so i dont pul anymore things out. bad thing about that ..doctors cant even find whats wrong wiht my leg. im like a medical mystery..i mean im 30 years old i pee on the side of my bed. im completely incapable of doing almost anything..and some ask me why do you think its cancer.. theres a reason..i have so many symptoms to cancer. the blurred vision. the weakness sensitivty to light and sound.. weakness in my body..tremors..bloodclots.. pain. and when i say pain i mean horrible god awful pain..and the reason im so frustated everyone says cancer would show up. on blood test. you cant have it. doctors look at me and say No you cant have it.. why cant i?
    lostandscared 34 Replies
    • February 11, 2009
    • 01:39 AM
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  • Your symptoms sound alike to some extent.. but what alot of you are missing out on. ..is you lived 16 years like this. i dont see myself living another 6 months this way.. i dont live a normal life..and have a little illness.someone mentioned go try acupuncture or this and that.. the truth is.i can hardly even walk. one sympton i also left out is my muscles are deteriorated..i can hardly lift a fork to feed my face..and the reason i cant walk is. i pulled something behind my leg.my muscles get so weak. in the morning i just want to collapse.. i pulled it out running to the bathroom. now i have a urinal by my bed.. so i dont pul anymore things out. bad thing about that ..doctors cant even find whats wrong wiht my leg. im like a medical mystery..i mean im 30 years old i pee on the side of my bed. im completely incapable of doing almost anything..and some ask me why do you think its cancer.. theres a reason..i have so many symptoms to cancer. the blurred vision. the weakness sensitivty to light and sound.. weakness in my body..tremors..bloodclots.. pain. and when i say pain i mean horrible god awful pain..and the reason im so frustated everyone says cancer would show up. on blood test. you cant have it. doctors look at me and say No you cant have it.. why cant i? What are your bowel movements like? Have you had extreme weight loss this past year? Are you able to eat? I suggest you look into Freddd's info on the B12 thread. The fact is, you are not going to get better by doing nothing...you may benefit from a trial of megadoses of methyl B12 if you look at Freddd's protocol. The supplements are fairly inexpensive. I'd say it's worth a try. DOM
    acuann 3080 Replies
    • February 11, 2009
    • 02:48 AM
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  • My stomach is a complete and utter mess. i get no enjoyment or fullness from eating.. there very soft.sometimes diarhea..loose. never normal..but i go atleast once a day maybe twice..yes i am taking everything you all say to heart im even willing to try the acupuncture..i want any of you to know i have money coming in soon..and if any of you lead me to a diagnosis.i will help you out or your family .you have my word on this.even if i do have cancer and im dying i will help you. im sure all of you would want to know.so you can write letters to your family and prepare.and get propper treatment,. cuz right now im going no where but in a downward spiral.
    lostandscared 34 Replies
    • February 11, 2009
    • 03:22 AM
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  • My stomach is a complete and utter mess. i get no enjoyment or fullness from eating.. there very soft.sometimes diarhea..loose. never normal..but i go atleast once a day maybe twice..yes i am taking everything you all say to heart im even willing to try the acupuncture..i want any of you to know i have money coming in soon..and if any of you lead me to a diagnosis.i will help you out or your family .you have my word on this.even if i do have cancer and im dying i will help you. im sure all of you would want to know.so you can write letters to your family and prepare.and get propper treatment,. cuz right now im going no where but in a downward spiral. Hi Lotsandscared, The one thing about the b12 hypothesis, and I didn't include more than 150 of my symptoms that developed, is that if that is it, a short trial can let you know very quickly if it is going to help. That depends on using the effective brands of course. I knew within hours that the b12 was going to change things a great deal. A one bottle trial of each of 4 things will tell you if it is going to help you or not.
    Freddd 3576 Replies
    • February 11, 2009
    • 04:59 AM
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