Discussions By Condition: I cannot get a diagnosis.

Tons of symptoms, ruining my life & no diagnosis

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: girlwithadream
  • December 9, 2006
  • 08:56 AM

Hi, my name is Shannon, I'm 21 years old. I have been very ill for about two years now and I have been to every doctor imaginable. They all ask me how I can live feeling so awful, yet they offer no help.

My symptoms include: severe daily headaches (I'm now on two different pain killers for that), extreme nausea and weakness, uncontrollable sweating and flushing for no reason, weight gain, strange blood pressure (it will be extremely low, then high, then normal), chest pain, chills, anxiety, difficulty breathing even after I take my asthma medication, vision changes, abdominal pain, nosebleeds that go on forever, bloody stools and urine, unexplained sores and bruises, fainting, and just overall feeling awful.

I have been tested for Leukemia and although my white blood cell count is quite high, the doctor fluffed it off. I was recently tested for Pheochromocytoma and the tests were "inconclusive" so I suggested a MRI of the adrenal glands, again, fluffed off. I've also been tested for mono; I've been to an endocrinologist, who told me that I'm fat and need to lose weight (yet how I can exercise when I'm fainting all the time -- I don't even eat because of the pain in my stomach). I've been to a neurologist and had a MRI and he said it was normal, although I saw something in the scan that did not look normal to me.

I have other medical problems that are being treated: depression, anxiety, PCOS & Metabolic Syndrome, severe asthma, thyroid disease, acid reflux, allergies.

I am so tired of feeling awful all the time. I spend most of the time curled up in a fetal position in my bed, crying. I've been to the emergency room several times and they tell me I have migranes -- which I don't. Migrane medicaiton doesn't work for me (I've tired over 30 different kinds). I don't know what to do anymore. I need some help and input.

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16 Replies:

  • Hi Shannon, sorry to see you struggling so much. Best recommendation I could give is see a good Naturopath, they can doo a series of test, plus Iris diagnosis, hair analysis, testing if you have mercury poisoning from dental fillings etc.Your hormonal system is out of whack.In our Revival Fellowship we do prayer and fasts, have seen some incredible results when the medical fraternity have given up on someone. Never give up hope or your dreams, fasting sure does help, as long as you do it under supervision, juices and vegetable diets work.Is it Hashimotos or Goitre, under of course.Diet consisting of fish, chicken, avoid at all costs Bread, wheat products, cool drinks, coffee, tea, herbal are ok, Vitamin B all will help, esp with depression.One day at a time, small steps to a greater life, seek and ye shall findGood luck
    Anonymous 42789 Replies
    • December 9, 2006
    • 10:14 AM
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  • Yes, you without a shadow of a doubt suffer metabolic syndrome or syndrome X. How was this diagnosed?? Visit www.womentowomen.org. Your triglycerides are probably through the roof also?? Do you have insulin resistance syndrome (IRS), this usually goes hand in hand with syndrome X? IRS and syndrome X would produce all your woes. Also, have you had your growth hormone and insulin like growth factor -1 (IGF-1) checked out. IRS prohibits normal function of growth hormone which is essential for us to fix injured cells and slow down the aging process. The woman to woman site has an email address and the site also mentions the best foods needed to reverse Syndrome X. I assume no one has told you how to reverse the syndrome by what you say in the post. Most doctors, including endocrinologists have little idea of the disastrous and life threatening situation IRS and Syndrome X place many in. Like you said, told to lose weight; very helpful not. For your severe asthma look into Buteyko breathing technique. If you breath through your mouth most of the time your problems will be made worse as you oxygen levels will not be balanced and you already have an acidic system, since you also have the acid reflux. Ideally we should never breathe through our mouth, that is why we have nose hairs to catch the small air particles so they don’t get into our lungs and cause irritation and mucus at the back of our throats to catch what the nose hair miss.A teaspoon of bicarbonate of soda dissolved in water is good for neutralizing the acid reflux. You will burp but that is just the chemical reaction and nothing to worry about. And the burping doesn’t last.Get your Metabolic syndrome under control and you will get your health back.Also look into taking L-Arginine oral powder, it is an essential amino acid (three times as day and on an EMPTY stomach) as this stimulates growth hormone; it looks as though your poor body needs lots of help to repair.Also, a naturopath or acupunturist who deals with Chinese medicine will go a long way in your healing.All the best,Agape,searchingsam
    searchingsam 54 Replies
    • December 9, 2006
    • 10:22 AM
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  • Whoops!! www.womentowomen.com . com not org.And you might like to have a read through some of www.mercola.com, a site I stumbled upon while looking into the dangers of all these false sugars.All the bestsearchingsam
    searchingsam 54 Replies
    • December 9, 2006
    • 10:47 AM
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  • dear sharoni saw your problem and i know how to help yoou in short time. this illnes name ZBCC in polish shortcut to english - FPOWB. ***k..ng Pain Of Whole Body. I propose to 1. find guy or gal, who can make love with you every time u feel not good2. eat some italian food, but not pizza - sa. salats, fresh meat barbeque, lot of vegetables3. chang your work4. make your life more happy - go to gym, try yoga, learn something interesting - pottery, exotic language5. say - i love you to your parentsbest regards, and forgot your hypochondria!!!
    Anonymous 42789 Replies
    • December 9, 2006
    • 04:06 PM
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  • I have some of the same issues as you...the list of symptoms goes on and on.I overheard an elderly gentleman having a conversation about his wife not being diagnosed as a diabetic until she went to another doctor. His advice: If you have a new ailment, see a new doctor. I went to the same hospital for 10+ years, Northwestern, thought to be one of the best, but I received no diagnosis. I finally got fet up and went to another doctor, and another doctor.I let the primary run the tests, they usually don't listen to your complaints, and when the primary refers me to another doctor, I tell her something new that I know my primary doctor ignored. I requested a rheumatology referral from my primary for weeks. Didn't get the referral until a lymph node surgeon suggested that I see a rheumatologist. Not only did I get the referral, but after 1 year with this primary doctor, and still no diagnosis, I now have a new primary doctor,who told me that I have Collagen Disorder, collagen disorder can cause Sjogrens Syndrome (I have the autoantibodies for Sjogrens -but still no diagnosis from a doctor yet), Sjogrens Syndrome can be caused from Lupus. So is my Collagen Disorder actually Lupus??? My new primary doctor also referred me to a Rheumatologist. I'm expecting to have 2 appontments with a Rhematologist - one that specializes in Sjogrens Syndrome and Scleroderma, and another who, as far as I know, simply has a Rheumatology speciality. My advice, to has many different doctors as your insurance will allow you. Make sure you get copies of all of your important and abnormal medical records to take with you so each of your new doctors can find something that they want to investigate. I've learned not to tell the doctor what I suspect is the problem, because the doctors seem to get offended. I simply guide the doctor in the direction of following the test result, not their hypothesis. I know it's frustrating, and it's hard to be patient - remember, the doctor will run out of tests to order soon - they'll have to make a diagonis eventually. Good luck.Chicago
    Anonymous 42789 Replies
    • December 9, 2006
    • 09:08 PM
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  • I appreciate all of your comments. I don't have diabetes or anything and I'm tested for that all the time. Apparently, all of my blood test results are normal, which is confusing considering how awful I feel. Anyway, thanks again for all of the advice.
    girlwithadream 3 Replies
    • December 10, 2006
    • 11:16 AM
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  • Sorry this is a long post, Shannon.It sure can get very confusing, especially when tests come through surposedly normal. I knew I was IRS in 1994, and wondered why I was told a GTT done in 1996 showed everything was normal. I didnt bother to look at the test personally, just took the nurses word for it when I phoned up for my test results. Ten years later, the other day, I ask for a copy of the test and to my anger the pathologist back in 1996 had decided not to send my blood samples on for further investigation of the insulin as he saw that I had normal glucose readings. In his opinion, if my glucose was normal that was that and everything else, like the insulin, should be fine. There is too much emphasis on glucose readings, and hardly any attention paid to insulin; probably since most doctors dont know the serious illnesses that are caused by too high levels of insulin. They also probably think, like the pathologist doing my bloods, that if glucose is normal the insulin will be also, or at least not causing any problems. My readings for glucose are always normal but my insulin is always high. I too was just told that I dont have diabetes or hyperglycemia which I already knew. No further investigations, come back when you really are sick.I could be angry with myself for not checking the test results in 1996, but like most of us we learn the hard way, we are taught that we can trust doctors, but mostly we can't trust doctors as they are either ill informed or what they feel is irrelevant is actually very relevant.It is very desturbing that you have high white blood cell count but the doctor doesn't want to look into it; you may very well have leukemia. I assume you meant you have had an MRI on your brain, and not the adrenal glands? If you think there is something you really have to insist on the neurologist telling you why he feels there is nothing on the MRI. For example, my quad friend has schizophrenia, I insisted on an MRI of her brain (which I had to pay for becasue the psychiatrist refused and sent her on her way as an attention seeker) when I discovered that those with this illness have various brain structure indicators and I was quite confident this shoud give her the evidence she needed and thus the treatment. Sure enough, her MRI showed typical structure of someone with schizophrenia, but she was still ignored. How ridiculous is that???You may very well have a tumor of the pituritry and would definitely explain many of your symptoms, many you describe indecate Cushing's syndrome. If you are overweight but your arms and legs are relatively thin and if you show any signs of abnormal hair growth this could be a strong contender.Do you live in a very small place with limited GP's? If not, you really should take all your test results and see another GP who can refer you to a different endocrinologist. Make a clean slate of it. I have recently spent a considerable amount of money to fly somewhere else in Australia; even then I can't guarentee the test I have requested.It is all so frustrating and I really feel for you and hope you dont have to fight doctors for as long as some of us here. My fight started at age 12 and I am now 37. Nag, nag and nag some more is all we can do, apart from seeking second opinions which many of us can't afford or don't have access to. I just hope my visit to another endocrinologist will be the end of my battles.All the best.Agape,searchingsam
    searchingsam 54 Replies
    • December 10, 2006
    • 00:56 PM
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  • Searchingsam, Thank you very much for your post. I've had a MRI of the brain and my doctor says it's "normal." But then again, he told me my white blood cell count was "normal" and when I got the write-up on it, it was very high. It's still climbing higher to this day. I asked my doctor if Leukemia is a possibility and he says if it were, I would be dead already. I have also been tested for Cushings Syndrome and don't have that. I live in a very small town, so it's hard to find doctors, especially ones that take my insurance. I have to do a lot of travelling to find doctors -- and that's just what I'm going to do. I need answers. I'm sorry that you have had to go through so much as well. I can't even imagine suffering with symptoms for that long. I've been ill since I was about 11 or 12 and I'm 21 now and going crazy. I hope that your trip to the endocrinologist will be helpful and have you on your way to recovery! Thank you again for your response!
    girlwithadream 3 Replies
    • December 10, 2006
    • 02:05 PM
    • 0
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  • Try Niacinimide. A defeciency in niacinimide will cause high blood pressure, weight gain/loss, neurological disorders, problems with your intestinal tract, problems with your skin (severe looking acne), photosensitive dermatitis, diarrhea, dementia, irritability, etc.Also increase your protein intake.Try it, it won't hurt you. I suggest about 500 mg/day of niacinimide.
    Anonymous 42789 Replies
    • December 11, 2006
    • 09:11 AM
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  • go to a cardiologist, maybe its the palputations which cause all these symptoms.....and yes, if you still keep fainting....just go to the ER
    Anonymous 42789 Replies
    • December 11, 2006
    • 07:07 PM
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  • 15 years ago I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia by 3 MDs; and told there was nothing that they could do and to go on disability. I had 2 young boys at that time and could hardly get out of bed let alone FUNCTION. I was about to "check out" when I was led to Chiropractic Nutritionalist and saved my life - Literally. We found out I had many FOOD ALLERGIES and problems with my ADRENAL glands and PITUITARY. My treament included raw glandular Therapy i.e. raw PITUITARY, SPLEEN, THYMUS (IMMUNE SYSTEM)etc. I had to revamp my sleep patterns and reduce my STRESS level (got out of an 8 year NEGATIVE,DRAINING marriage) Took herbs and vitamins and changed my diet... about 10 months later I went into "remission" and never looked back!! I've been a Massage Therapist for 14 years now and my desire to help others only gets stronger. I'm currently studying to be an Acupucture Physician and Herbologist (3 more years). Also-Nutri Sweet, artificial sweetners, etc I've noticed to be key factors in many of my patients w/ energy/pain issues.:eek: caffeine, dairy, alcohol(big one) and STRESS EFFECTS FHOW YOUR BRAIN DEALS WITH PAIN!!! Louis Hay "why we don't heal" is a must read. You may check out acupuncture too as there are many patients helped, especially in chronic or prolonged "imbalances" How's your WATER intake? Water is truly Gods/Natures healer and detoxifyer. Taking many western rx's can build up toxins in your organs and cause the body to go further out of balance. Also- watch your thoughts because negative thoughts are POWERFUL and can be manifest thru a waekened(deficient) person. Focus on POSITIVE, BREATH deeply, do Tai chi or Qi Gong and let the healing begin!!!;) NEGATIVE EMOTIONS=NEGATIVE PHYSICAL REALITY! iT'S HARD- BUT BECOME positive AND TRULY BELIEVE THAT IS YOUR NATURAL STATE. YOU DESERVE NO LESS!!!nAMASTE~~1111HEALER
    1111healer 106 Replies
    • December 11, 2006
    • 09:36 PM
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  • Hi there,I am new to this site, but was intrigued by your post. Please excuse the length of my reply. I hope it will give you some ideas.I have recently been experiencing many of the same difficulties that you have listed. I am 33 years old, diagnosed with PCOS in my teens, and have had MANY digestive issues for years that no one was able to explain. I was told that it was either my imagination, stress, or most recently, depression. I have finally found the beginnings of an answer and have been improving steadily for the last few months. I would suggest getting tested for Celiac Disease. Please note, it is an auto-immune disease, triggered by an allergy-like response to the protein, gluten (found in wheat, barley and rye). All celiacs present with different symptoms. There is no truely "typical" case. It could explain many of the problems you have mentioned. (Among others, I have suffered from migraines, crippling abdominal pain, nausea, vomitting, constant diarrhea, joint pain, muscle cramps, depression, fatigue, lack of energy and motivation,anxiety, weight gain at some times, weight loss at others.... and the list goes on....)Be warned; it is extremely elusive to diagnose. A negative blood test does not rule it out as a possiblility. The average diagnosis time for a celiac patient is anywhere from 7-10 years, even with a gastroscope and biopsies (the gold standard test). It is easy to overlook a damaged part of the intestine. In addition, some people can be asymptomatic for years before developing symptoms. It is not unheard of for someone to be diagnosed quite late in life ( I know someone who was over 60!). Celiac disease is also not rare, as it was once believed to be. Likely every 1:150 people rather than the medical text estimation of 1:2000. Also, do not let anyone tell you that it is unlikely if you are carrying extra weight. Different bodies react differently to 'starvation' conditions. Celiacs come in all shapes and sizes. If you have PCOS you likely know that your body produces too much insulin, which acts to aid in storing your food energy (aka sugar). You may not be absorbing enough of the food you are eating; then whatever you are getting is being stored too quickly. Being an auto-immune problem, it can also indicate the presence of others. Often, patients with one auto-immune disease, find they have more than one. (Just to add to the 'fun'???)Adjusting to the diet can be a challenge, and recovery can be slow, but it is one of the only disease that has a non-drug cure.Whatever the outcome, DO NOT GIVE UP!!!Keep researching, keep questioning. Take an active role in your diagnosis. Ask for tests, just to rule things out if for no othe rreason. piece of mind is worth more than the cost of inconvenience or looking foolish. Don't be afraid to speak up to doctors and anyone else who may not be hearing you. You need to be your own advocate. If you don't fight for yourself, no one will. If you are shy, take someone you trust along with you to your appointments.good luck!!Hang in there.I hope you find an answer soon.
    attic_hobbit 1 Replies
    • December 11, 2006
    • 10:30 PM
    • 0
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  • dear sharoni saw your problem and i know how to help yoou in short time. this illnes name ZBCC in polish shortcut to english - FPOWB. ***k..ng Pain Of Whole Body. I propose to 1. find guy or gal, who can make love with you every time u feel not good2. eat some italian food, but not pizza - sa. salats, fresh meat barbeque, lot of vegetables3. chang your work4. make your life more happy - go to gym, try yoga, learn something interesting - pottery, exotic language5. say - i love you to your parentsbest regards, and forgot your hypochondria!!! this guy is an idiot --- good thing he's not a doctor.....
    Anonymous 42789 Replies
    • December 12, 2006
    • 08:21 AM
    • 0
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  • Thank you all so much for your help. I recently had some blood and urine work done and finally got the results back. They confirmed that I do have Pheochromocytoma and that the tumor is most likely excreeting dopamine, because my dopamine levels are off the cart. I also have a negative amount of epinepherine in me (strange ...). I am going to keep researching though, because most of my doctors get things wrong all the time. Thank you all again!
    girlwithadream 3 Replies
    • December 14, 2006
    • 03:02 PM
    • 0
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  • Please get a CT of your kidneys-kidney disease is one of the most common disorders, often misdiagnosed.The symptoms you have certainly bear looking into.Cysts can grow to enormous dimensions, and numbers.Good luck, and keep me posted **S**
    Anonymous 42789 Replies
    • December 22, 2006
    • 04:29 AM
    • 0
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  • hey i'm a 19 yr old girl who has similar symptoms to yours. I would tell you how sorry i am that you feel the way you do, but i know that dosnt really help at this point when all you want is answers.- I dont have answers for you, and I wish I did but i'm not a dr.I have abdominal symptoms with little to no relief from meds, I have found that marijuana is the only thing that helps me get through the pain, also helps with the eating, sleeping, and depression.It may or may not work for you. i dont know but I just wanted to throw it out there.-I know a lot of people are against marijuana, but for me it helps a lot. and at this point going from normal active teenager to very limited sick person with everyone thinging she's crazy going on a year now. it's one of the few things I'm still able to do.I hope you find a dr who can help you!p.s I think the best way to get the dr.s attention is to tell them if they dont keep trying to find out what's wrong they're gonna find out on the autopsy. its a little harsh but gets the point accross that you are very serious and ***n sure that something is wrong and needs attention. -everyone who tells you to keep searching for new dr.s is absolutely right, keep going till you find the right one for you.-M
    Anonymous 42789 Replies
    • September 2, 2009
    • 04:46 AM
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