Discussions By Condition: I cannot get a diagnosis.

19 year old with mystery illness...

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: MetalMX
  • September 21, 2008
  • 09:44 AM

Hi,

Im a male im 19 years of age at 190cm tall or 6"3. First it started as just a shortness of breath that would come and g:(o then chest pains. I went to the emergency room in a period of two weeks i think 7 or 8 nights... where symptoms were shortness of breath, chest pains, dizziness, freezing cold hands.

Right now i have periods of feeling good then suddenly feeling violently ill and unwell. Any kind of exertion such as weight training that ive done for the past 1 and a half years after the session leaves me feeling short of breath, my pulse becomes rapid, i feel dizzy like im going to faint and my hands become like ice.

My current symptoms are (When i get these "attacks" as i like to call them, then they go away later, this doesnt refer to all symptoms):

*Shortness of breath
* Feeling of congestion or blockage in the throat (gargaling listerine seems to help)
* Periods of suddenly experiencing extreme fatigue... then back to normal with energy later.
* Freezing cold hands
* Turning sometimes pale or sometimes really pale with a yellowish tint (The yellowish tint is on the forehead, cheeks, nose and chin as my sister has told me when i have these attacks)
* Joints feel sharp in the knees and pelvic bone... when sitting on hard surfaces i can feel my **m bones and i cannot sit on any hard surfaces, and when leaning on the side laying down like on the beach i can feel my pelvic bone and its impossible to lie sideways. Also had trouble walking much for a couple of days due to pain and discomfort in the knee and pelvic joints
* Muscle Loss and weakness, loss of strength.
* Periods of weight loss then weight gain... regardless of diet. For example weight was 104kgs then 2 days later 99kgs then next day 104kgs then next day 107kgs... currently about 100kgs
* Its hard to eat difficult to digest foods and foods that need to be chewed long like meat, vegetables with lots of fibre etc... my stomach doesnt feel good and i get discomfort, its easier to eat yogurts, milks etc... and i feel better when i don't eat much.
* developed dark bags under the eyes which are pretty prominent
* appetite loss then it comes back alternating
* One day my pulse suddenly rose to 150 and stayed their for 20 minutes then returned to normal
* Also pulse at the moment is weak around 45.
* Swelling of the legs and waist sometimes, pants would become tight then loose


I have been hospitalised for 5 days and they found nothing. I have seen:

* Chest specialist... CT scan found residual thymic tissue in the lungs but within normal limits for a person my age. Pancreas, liver and the spleen are normal. Discrepency in the size of the kindeys, left kidney 9.5cm, right kidney 13.5cm. Their are two renal arteries to the left kidney but both seem to be normal and dont contain a stenosis. Lung function tests we're normal.

* Doing a bone mineral density scan (DEXA) and full endocrine blood work tomorrow before seeing the endocrinologist in the afternoon to see what treatment is needed.

* Endoscopy showed mild gastritis, colonoscopy was inconclusive.

* Rheumatiod factor was tested and i dont have rheumatiod arthritis.

* I have been diagnosed with hashimotos thyroiditis (autoimmune disease) form of hypothyroidism in Janurary.

* In june this year a doctor i saw found low levels of zinc, iron, calcium, testosterone and a high level of estrogen and cortisol also a positive test for candida albicans in the blood nine times higher then normal 183 IgG. My tongue is also white in the back


I have endocrine problems low testosterone, high estrogen and cortisol levels which i am addressing at the moment but these problems i dont think fully explain the symptoms ive been experiencing recently.


My IgE levels we're 2000 2 years ago with very high allergies to dust mites and common grasses though then i had no symptoms whatsoever at present when tested a week ago IgE was 3810.

All i can do at the moment is sit at home and occassionally go out for a walk or to the shops thats it, most kinds of exertion leave me feeling quite unwell
Any information would be useful to get a diagnosis, it has been ***l everyday since this started happening and if i don't find an answer soon i dont know what i'll do.

Thanks.

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19 Replies:

  • i have had the xact symptoms that started when i was 18 after i contracted a urinary tract infec. from my first girlfriend.my life has been difficult,they tried telling me i had reiders syndrome.so i read up and reiders is a sexually transmitted form of arthritis that hits you does its dammage then theres no trace thats visual but i know you feel it bro im fukin about done.bring the dope.i take oxycontin 40 mg 3 times a day and a muscle relaxer.ganja helps a little with the mental war.keep movin even if your movin slow,bodies in motion stay in motion and for me the longer i lay in bed the worse off i am .i can take the pain but mentally it pushes me to my limit and i flip occassionally.my counselor told me to get a bat and **** up some trees or an old car in the woods or something.i used to curl 185 pounds for 5 reps and did all sports growing up track and field hurdles streetfights all that.now im 34 and look fine but feel like im barely draggin myself around.i was just discovering that disease athatosis and i really truly feel thats what i have i think ive been misdiagnosed due to lack of a good health insurance plan.seriously though i read your symptoms and i couldnt have described it better myself,we definately share the same symptoms. keep the faith try not to get to upset it dosnt get better man.18 to 34 still here.
    Anonymous 42789 Replies
    • September 22, 2008
    • 05:30 AM
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  • Does anyone have any idea whatsoever what this could be??? I cannot live anymore, i am about to kill myself if i dont find a cure soon because i cannot endure another of these attacks and feeling like this for one day longer!!! I am literally sleeping in my car outside emergency so if i have one of these attacks i can come right in, i have no life at the moment just waiting for !
    MetalMX 15 Replies
    • September 22, 2008
    • 09:43 AM
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  • Has anyone talked to you about renal insufficiency? This is scary information, but you might try here: http://www.igan.ca/id77.html
    aquila 1263 Replies
    • September 22, 2008
    • 05:11 PM
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  • Well i've read all your Symptoms and i think that you may be having a rheumatoid disease.i am very interested in your laboratory results and about what you feel.i think that you may have: lupus, dermatomiositis, polimiositis, scleroderma, wegener's disease, ore hyper Ige syndrome.Sometimes when you have high levels of cortisol all researches of FR could be negative that's why i wouldnt discard the lupus diagnosis.The problems in your breathing could be caused by many diseases but, all your syntoms guide me to a rheumatology disease such as scleroderma.i wish i could be in contact with you cause i have questions that may guide us to a correct diagnosis.i'm from ecuador and i'm a ypoung doctor, that's why my english could be strange.my e mail: paules86@hotmail.comi'm very interested in your case and i wish i could help you but to get to that i need to get a little more of information.
    paules86 18 Replies
    • September 23, 2008
    • 05:38 AM
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  • I dont know what it is. One thing i think it could be is lack of blood in the body and anemia. Ive had low iron for as long as i can remember with my low testosterone.A chinese medicine doctor said i had "not enough blood in the body", "heart is very weak" when he checked my pulse and felt my freezing cold hands.Also the thing about me turning really pale and then when i really feel like im going to die yellow on my forehead, nose, cheeks and chin... any idea what that means???Yesterday after taking blood out in the hospital an hour later i couldnt move or talk i was short of breath and immobilised i had NO energy to move whatsoever i felt as death was close. I couldnt breath and started feeling like i might lose conciousness... this feeling is basically like before dieing i would imagine.Any more ideas? possibly if their is not enough blood in my body what tests would show this?
    MetalMX 15 Replies
    • September 23, 2008
    • 10:54 AM
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  • I really dont know what it is.All i know is i keep getting short of breath and my hands and feet become freezing cold. If this gets worse then i start having (recently) extreme fatigue, last time i was sitting in the car and had this attack and i couldnt move or speak i felt if i did either i would stop breathing and i became dizzy. Also i would turn yellow on my forehead, cheeks, nose and chin is what my sister told me when it really gets bad.Any more ideas?My eGfR for the kidneys was 75 about 3 months ago... and the recent blood work shows EgFR >60 with an asterix next to it.... so i dont know the exact number, the ****ing doctors just keep saying everything is normal when they don't know whats wrong!A chinese medicine doctor told me these exact words when i had one of those attacks i came in to see him... ( Your heart is very weak, very little pulse and your circulation is very poor. You don't have enough blood!)Enough blood that is interesting since after i drew blood yesterday 2 hours later i had this feeling of unimaginable fatigue or immobility and shortness of breath that i felt like i was going to die, so i could be lacking enough blood, since when i was born i had multiple blood transfusions!!! so i would be born alive!And i have had low iron and testosterone for as long as i can remember.Well the endocrinologist i saw asked i do a ACTH stimulation test and 24 hour cortisol... she said the high ACTH could be inhibiting the normal function of my pituitary. If this is the main problem then it can be fixed if not then she said she would commence testosterone replacement with shots which is a long time coming!!!My endocrine blood work (most of these have an asterix to it):Growth Hormone: 0.8 mU/dl * (0 - 15 )IGF-1: 22.5 * (dont know the range but its very low)Testosterone: 10.1 ( 12 - 32)SHBG: 54.1 (20 - 71.2 )LH: 3.2 *FSH: 5.1 *ACTH: 15.7 *Cortisol: 510 *Vitamin D: 48 (Low)Basically high ACTH and cortisol with low anabolic hormones GH, Testosterone, IGF-1 and low stimulating hormones LH and FSH.
    MetalMX 15 Replies
    • September 23, 2008
    • 11:26 AM
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  • Also forgot to mention any kind of exertion or exercise or walking too long triggers these symptoms and i begin feeling very ill.
    MetalMX 15 Replies
    • September 23, 2008
    • 00:09 PM
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  • I really dont know what it is.All i know is i keep getting short of breath and my hands and feet become freezing cold. If this gets worse then i start having (recently) extreme fatigue, last time i was sitting in the car and had this attack and i couldnt move or speak i felt if i did either i would stop breathing and i became dizzy. Also i would turn yellow on my forehead, cheeks, nose and chin is what my sister told me when it really gets bad.Any more ideas?My eGfR for the kidneys was 75 about 3 months ago... and the recent blood work shows EgFR >60 with an asterix next to it.... so i dont know the exact number, the ****ing doctors just keep saying everything is normal when they don't know whats wrong!A chinese medicine doctor told me these exact words when i had one of those attacks i came in to see him... ( Your heart is very weak, very little pulse and your circulation is very poor. You don't have enough blood!)Enough blood that is interesting since after i drew blood yesterday 2 hours later i had this feeling of unimaginable fatigue or immobility and shortness of breath that i felt like i was going to die, so i could be lacking enough blood, since when i was born i had multiple blood transfusions!!! so i would be born alive!And i have had low iron and testosterone for as long as i can remember.Well the endocrinologist i saw asked i do a ACTH stimulation test and 24 hour cortisol... she said the high ACTH could be inhibiting the normal function of my pituitary. If this is the main problem then it can be fixed if not then she said she would commence testosterone replacement with shots which is a long time coming!!!My endocrine blood work (most of these have an asterix to it):Growth Hormone: 0.8 mU/dl * (0 - 15 )IGF-1: 22.5 * (dont know the range but its very low)Testosterone: 10.1 ( 12 - 32)SHBG: 54.1 (20 - 71.2 )LH: 3.2 *FSH: 5.1 *ACTH: 15.7 *Cortisol: 510 *Vitamin D: 48 (Low)Basically high ACTH and cortisol with low anabolic hormones GH, Testosterone, IGF-1 and low stimulating hormones LH and FSH.
    MetalMX 15 Replies
    • September 23, 2008
    • 00:13 PM
    • 0
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  • Hi MetalMX, Most all of those symtoms are on the b12 deficiency symtoms list. http://forums.wrongdiagnosis.com/showthread.php?p=120164#post120164 Come on over and check out the list and see how many you have. The one good thing about the b12 hypothesis is that it can be tested in a matter of weeks.
    Freddd 3576 Replies
    • September 23, 2008
    • 05:07 PM
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  • I've read your symptoms and i think that you are missing the CK test it can help us to see if the problem is in the muscles. your problem i think is in the colagen.Scleroderma or dermatomiositys could explain a lot of your symptoms. I wouldn't discard lyme's disease cause when its very advanced it has similar symptoms that you have. I'm very interested in your case. my mail: paules86@hotmail.com.
    paules86 18 Replies
    • September 24, 2008
    • 00:50 AM
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  • Ithink that a CK test could help us to find out if the problem is in the muscles that's because you tell us that your problem gats bigger after you do excersice. I wouldn't discard lyme's disease because when this disease is very advanced it has symptoms similar to yours. The problem as well could be a colagen disease such as Lupus or scleroderma or dermatomyositis that can explain the majority of your symptoms.Theres also miastenia gravis that can explain your symptoms but to confirm or discard it we need a CK test in blood. I realiza that you can also have symptoms that many books describe in wegener's disease. Im very interested in your case. I'd like more information and a gool physical exam could help us. my mail: paules86@hotmail.com
    paules86 18 Replies
    • September 24, 2008
    • 00:52 AM
    • 0
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  • Ithink that a CK test could help us to find out if the problem is in the muscles that's because you tell us that your problem gats bigger after you do excersice. I wouldn't discard lyme's disease because when this disease is very advanced it has symptoms similar to yours. The problem as well could be a colagen disease such as Lupus or scleroderma or dermatomyositis that can explain the majority of your symptoms.Theres also miastenia gravis that can explain your symptoms but to confirm or discard it we need a CK test in blood. I realiza that you can also have symptoms that many books describe in wegener's disease. Im very interested in your case. I'd like more information and a gool physical exam could help us. my mail: paules86@hotmail.com
    paules86 18 Replies
    • September 24, 2008
    • 00:57 AM
    • 0
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  • The symptoms you describe sound like organophosphate poisoning so could be Aerotoxic syndrome - have you flown much? Or could you have been exposed to pesticides? They affect the autonomic nervous system so they affect the function of all the organs of the body but many tests will come back normal.
    Anonymous 42789 Replies
    • September 24, 2008
    • 01:29 AM
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  • 14th of June My Creatine Kinase Level was 715!, before this about 900.August it was 350.
    MetalMX 15 Replies
    • September 24, 2008
    • 09:56 AM
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  • The yellow color could be paleness and shortness of breath and palpitations could be signs of an anxiety disorder. Check this site and see if you have any of these symptoms. More than 4 would mean you might have an anxiety problem. Are you tensed at that point? And afraid of the sensations? If all your tests about it are normal then it could be this or maybe you dol have symptoms and are afraid which causes anxiety which makes you feel worse. Once a doctor rules out everything only then can u know for sure. It could be something else, a combination of both or only anxiety.Do check this out. Nothing to be worried about if you have this since its harmless and curable. Yet please make sure all your other tests DO COME NORMAL.http://www.algy.com/anxiety/files/barlow.html
    angelrays 2 Replies
    • September 24, 2008
    • 10:34 AM
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  • well after what you're telling me about your ck i'm sure that your problem is in the muscles that's the reason why those enzimes are so high. it would be helpful if your doctor discard or confirm hashimoto's disease.i suggest you to study these diseases: dermatomyositis, polymiositis, mcardle disease, lupus, scleroderma and miastenia gravis. tell this to your doctor. keep me informed about your condition.
    paules86 18 Replies
    • September 24, 2008
    • 01:41 PM
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  • I am starting to think this is what is happening:www.wholeapproach.com/candida.html.weblocParticularly the bit about the environmental and food sensitivities im experiencing. And when i had hot coffee i suddenly developed a violent burst of all of these symptoms, so im pretty sure my systemic candiditis and intestinal permiability is what is behind this. Candida was confirmed and found in the blood! in large amounts. Endoscopy showed gastritis but they didnt do a biopsy which is just ridicilous to rule out permiability and im 100 percent certain it is occuring. I am seeing a Dr Borody very soon to address my gastro problems and i on a candida control diet ( low carbohdrate, with more emphasis on fats and soft protein foods so i can digest them.) Also on probiotics (higher doses), olive leaf extract liquid, coconut and MCT oil (all which have anti-bacterial properties), and a multivitamin. Also i have these chinese herbs which are doing wonders for my circulation and mucous in my throat they work rapidly which have been given to me by a chinese natural therpies doctor who diagnoses your problem without you even mentioning any symptoms by checking the tongue, your pulse and a few other things.What your saying paulie could also be true but at the moment i feel this is more likely. If you can let me know how i can test for those diseases you mentioned i would definitely test for them.I have attached the blood work for the candida. All which is very high.
    MetalMX 15 Replies
    • September 24, 2008
    • 02:27 PM
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  • My tongue is also a black hairy colour. If i do have systemic candiditis then can i just show my blood tests showing that the candida albicans we're found in high amounts in the blood at emergency and they will treat it?If have found this drug which is the newest one for the invasive candiditisEraxis - A New, Safer Drug SCIENCE: Quest Diagnostics New Drug for Candida Infections (May, 2006) When we hear “Candida infections” or candidiasis, we don’t normally think fatal but certain forms can be. In the case of blood infections caused by Candida (usually Candida albicans), the mortality rate is about 40 % and there are about 60 thousand cases annually in this country. FDA recently approved the use of a new, novel drug called “anidulafungin” (Eraxis®). This drug can be used to treat all kinds of Candida infections including blood stream infections (candidemia), esophageal infections (candidiasis), abdominal abscesses, peritonitis and other types of infections. The drug, which is administered intravenously, is well tolerated and the only adverse effects noted thus far have been mild diarrhea, headache and slight elevations in liver enzymes. SCIENCE: FDA FDA Approves New Treatment for Fungal Infections The Food and Drug Administration approved Eraxis™ (anidulafungin) to treat certain infections caused by Candida, a yeast-like fungus that can cause serious infections in hospitalized patients or patients with compromised immune systems. "This product offers a new alternative therapy for several types of infections associated with Candida", said Dr. Steven Galson, director of the FDA's Center for Drug Evaluation and Research. "It is a helpful addition to the available antifungal medications that can be used in the treatment of these potentially serious fungal conditions." Eraxis, a new molecular entity that has never been marketed in the United States, is an antifungal drug that is administered intravenously, and is used to treat Candida infections in the esophagus (candidiasis), blood stream (candidemia), and other forms of Candida infections, including abdominal abscesses and peritonitis (inflammation of the lining of the abdominal cavity). The safety and efficacy of Eraxis was evaluated in clinical studies and Eraxis was shown to be safe and effective in the treatment of esophageal candidiasis, candidemia, and other Candida infections including abdominal abscesses and peritonitis. Eraxis was generally well tolerated in clinical studies. The most commonly reported adverse events were mild diarrhea, mild elevations in laboratory tests of liver enzymes, and headache. Some patients experienced infusion-related reactions, most of which were mild. In a few patients with significant underlying medical conditions who were on multiple concomitant medications, there were reports of serious hepatic abnormalities.
    MetalMX 15 Replies
    • September 25, 2008
    • 11:49 AM
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  • The symptoms im having i strongly believe are from poor blood circulation or some kind of vascular disease * shortness of breath (sometimes feeling lack of energy to breath) * freezing hands and feet and numbness* mental foggyness/slow thinking * less appetite * irregular heart beat * chronic fatigue, * swelling in certain parts of the body would come and go in the thighs, **m, lowerback, * sudden dizziness/lightheadedness * joint pain/difficulty walking sometimes due to this and the joints feelin odd... clicking and cracking* Waking up 3-4 times per night for the past 3 years to eat something (night eating syndrome) i just don't know WHY this is happening. About to do MRI of the brain and a sleep study for my constant waking up and eating.So far these are the things found: Hashimoto's thyroiditis (hypothyroidism), High Thyroid Peroxidase Antibodies.Other Endocrine problems Low T, High E, High cortisol & ACTH, Low GH & IGF-1. (known this since Janurary of this year way before symptoms began), known i have Low Testosterone since 2006 when i was 15-16.Echocardiogram -"insignificant" mitral valve prolapse Echocardiogram -"insignificant" mitral valve regurgitation Blood work - Low Cholesterol (always been low for me) , Low Iron levels, Low Transfer. S, Low Ferritin (also always been low for me)24 hour holter monitor - Report: The predominant rhythm was sinus. Rare atrial extrasystoles: Frequent (43%- of total trace) periods of sinus bradycardia, min. rate =31 bpm, at 06:18am. Occasional periods of sinus tachycardia, max rate =118 bpm, nocturnally at 03:53am. Frequent periods of sinus arrhythmia. Max R-R interval was 2 sees and average heart rate was 59 bpm. No significant supraventricular and ventricular arrhythmias were noted during 24 hour monitoring. Endoscopy - mild inflammation of the small intestine Candida Albicans positive from blood work.CT Chest scan - "a little residual thymic tissue in the anterior mediastinum, within normal limits for the patient's age. Small left kidney 9.5cm (globally contracted), right kidney 13.5cm" Blood work - Highly elevated IgE levels of 3810... range 0 - 100 Blood work - Elevated Lymphocytes Blood work - Coagulation Coagulation Studies, 14/06/08 -PT - 14 (12.0 - 15.0) APTT - 26 (25 - 37) INE 1.0 (0.9 - 1.2) Coagulation Studies, 26/08/08 - PT - 14.8 sec (12.0 - 15.0) APTT - 35 sec (25 - 37) INR - 1.1 (0.9 - 1.2) Coagulation Studies, 01/09/08 - PT - 15.6 * (12.0 - 15.0) AAPT - 34 sec (25 - 37) INR - 1.2 (0.9 - 1.2) Nuclear antibodies pattern - No ANA Detected Nuclear antibodies Titre - Rheumatoid factor - Blood gases (Gas sample Type - Arterial): 02/09/08 - 01/09/08 FIO2 21% Not Available pH 7.43 7.47 * (7.36 - 7.44) p02 110mmHg * 43mmHg * (80 - 100) pCO2 39 mmHg 42mmHg (35-45) 02 Saturation 99% 81% * (95 - 99%) Actual bicarbonate 26 mmol/L 30 mmol/L (22 - 30) Base excess 2 mmol/L 6mmol/L * (-2 to 2) Dopamine, Urine 624 nmol/d - ( 400 - 2600 ) Catecholamines, Urine Noradrenaline - 63 nmol/d ( 45 - 680 ) Adrenaline - 19 nmol/d ( 5 - 80 )
    MetalMX 15 Replies
    • October 20, 2008
    • 03:16 PM
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