Discussions By Condition: I cannot get a diagnosis.

I dont think I have much time left, please help...

Posted In: I cannot get a diagnosis. 31 Replies
  • Posted By: HelpinOhio
  • November 5, 2008
  • 07:02 PM

Seriously, I feel like Im dying. Im 18 years old, and I feel that my life is over...Please I need help...
I have so many problems and symptoms, yet have no answers. Im not a hypochondriac, I would never lie about something like that. Im so young and I want to have a good life. If you have read my other thread, you know about my symptoms. Excuse me because I am very tired and cant think straight right now.

Ill give you a list of the main ones now: very dry skin and hair, flushed face, extreme sensitivity to cold and heat, ears go nearly def at times up to a few minutes, constant ringing in ears, hands/feet/extremities turn different colors turn purple when cold and go nearly numb, unnaturally very pale skin, discolored teeth with severe loss of enamel despite brushing 2-3 times a day, feel sick all the time, sever insomnia or oversleeping, soar throat and runny nose all the time, gradually worsening vision and hearing, dry eyes and in nose, see light spots and lights get stuck in eye, sensitivity to light, constant headache, extreme fatigue, unreal feeling/feel like Im in a dream, aching joints and muscles, horrible cramps, general weakness, stiff, chest pain and tightness, difficulty breathing, nearly fainting multiple times, bad constipation,

I could go on...Most of those have been going on for the past year, with some going back up to 6 years, Ive been to the doctors about 6 times in the past year (also counselors a few times). I had a EKG, chest X-Ray, stomach X-Ray and with dye, complete blood test, specific blood tests for thyroid, celiac, rheumatoid, arthritis, diabetes, some auto-immune. Urine tests. The doctors came up with this: low vitamin D (which Ive been taking for a while now), depression/anxiety, or PTSD (counselor said that). Now Im not trying to say the doctors are wrong, but none of those can account for even 1/4 of my total symptoms. Whatevers wrong with me has completely ruined my life. I lost precious, defining moments, from ages 12-18, should have been the best time of my life...I have little memory of it...Im stuck in time, in my mind, Im still that 11 year old boy...everything has passed me by. This is about more than this thread or this website, my life is on the line...Ive been feeling worse than ever lately. I wonder where Ill go when I die... but please, if you know anything please tell me, if you help me Ill be forever grateful. thank you...

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31 Replies:

  • The doctors came up with this: low vitamin D (which Ive been taking for a while now) Have you been tested for hyperparathyroidism? Try googling it. Ask your doctor for a PTH and calcium test. If any of these come back high you have hyperparathyroidism. It also causes low vit d, since the intestine stops absorbing it while atempting to stop calcium levels from rising. (vit d is absorbed in the intestine and used to absorb calcium.) Hope you find some answers soon...
    Anonymous 42,789 Replies
    • November 5, 2008
    • 10:16 PM
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  • The sensitivity to cold sounds like raynauds phenomenon. But if you have had an ana (I assume that is included in autoimmune), that doesn't really tell us anything, as raynauds is actually pretty common. Are you double jointed? While its possible you could have anxiety or the other conditions suggested by your doctors those don't explain a lot of your symptoms, and could actually be symptoms of something else, if the underlying condition causes hormone changes, or it could be a condition in addition to whatever is causing the rest of the symptoms. Is your urine ever a weird color? Are you tall short or average height? Do you have these symptoms at all times, or do some come and go? Do you run fevers?
    qwertyuiop123 453 Replies
    • November 6, 2008
    • 00:30 AM
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  • Is your mouth dry too, or just your eyes and the inside of your nose?
    qwertyuiop123 453 Replies
    • November 6, 2008
    • 00:35 AM
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  • I don't usually suggest people may have chronic fatigue or fibromyalgia, because some people feel that either a it doesn't exist or b it exists but they are only diagnosed with it because it cannot be proved that they do not have it, I was recently told i may have it though i don't feel i fit the symptoms, but it does seem as though you fit some of the symptoms, does this sound kind of like your symptoms?Common symptoms of fibromyalgia and chronic fatigue syndrome:Pain - The pain of fibromyalgia has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.Fatigue - This symptom can be mild in some fibromyalgia patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.Sleep disorder - Most fibromyalgia patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine that recorded the brain waves of patients during sleep. Researchers found that the majority of fibromyalgia patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it.Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you've just been run over by a Mack truck—what doctors refer to as unrefreshing sleep—it is reasonable for your physician to assume that you have a sleep disorder. Many fibromyalgia patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea (as well as the newly discovered form of interrupted breathing called upper airway resistance syndrome, or UARS), bruxism (teeth grinding), periodic limb movement during sleep (jerking of arms and legs), and restless legs syndrome (difficulty sitting still in the evenings).Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of fibromyalgia patients. Acid reflux or gastroesophageal reflux disease (GERD) also occurs with the same high frequency.Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 70% of fibromyalgia patients and can pose a major problem in coping for this patient group.Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one-quarter of fibromyalgia patients. However, a 1997 published report indicated that close to 75% of fibromyalgia patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.Other common symptoms - Premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur. Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications they are prescribed.Aggravating factors - Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to fibromyalgia symptom flare-ups.
    qwertyuiop123 453 Replies
    • November 6, 2008
    • 00:54 AM
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  • My mother in law had the same symptoms and it was fibromyalgia coupled with severe depression.
    Anonymous 42,789 Replies
    • November 6, 2008
    • 04:14 AM
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  • Have you been tested for hyperparathyroidism? Try googling it. Ask your doctor for a PTH and calcium test. If any of these come back high you have hyperparathyroidism. It also causes low vit d, since the intestine stops absorbing it while atempting to stop calcium levels from rising. (vit d is absorbed in the intestine and used to absorb calcium.) Hope you find some answers soon... I was informed after a lot of research that I should ask my doctor for all the different thyroid tests if I had a family member with it and suspected it, so I did. Im not sure if they tested for that, but my doctor did specific tests for 3 different thyroid tests because I asked specifically. They said thats all the tests they had for it. Anyways they came up with nothing. There is other reasons why I could have had low vitamin D though (I hardly ever went out in the sun for the reason I was sick and looked bad, and I didnt get any vit d or Calcium because I hardly ever drank milk or got food with it, I have mild lactose intolerance).
    HelpinOhio 32 Replies
    • November 6, 2008
    • 09:05 AM
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  • The sensitivity to cold sounds like raynauds phenomenon. But if you have had an ana (I assume that is included in autoimmune), that doesn't really tell us anything, as raynauds is actually pretty common. Are you double jointed? While its possible you could have anxiety or the other conditions suggested by your doctors those don't explain a lot of your symptoms, and could actually be symptoms of something else, if the underlying condition causes hormone changes, or it could be a condition in addition to whatever is causing the rest of the symptoms. Is your urine ever a weird color? Are you tall short or average height? Do you have these symptoms at all times, or do some come and go? Do you run fevers? To Answer your questions: No, Im not double jointed. My urine looks odd sometimes to me, but I could be wrong. Im about average height, but Im shorter than I should be, I know some reasons for that. I have a lot of the symptoms at all times, others get worse and better, for example Ive felt like I was dying, and then not more than 2 hours later I dont feel like Im anywhere near dying. I run fevers once in a while, my face is flushed most the time and my head is hot. My body temperature seems to be all over the place. My mouth is dry sometimes, I wouldnt say specifally though. I do have a lot of symptoms from fibromyalgia and CFS. Im pretty sure I was tested for those though. Im pretty certain I was at least tested for fibromyalgia when they were doing rheumatoid.
    HelpinOhio 32 Replies
    • November 6, 2008
    • 09:12 AM
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  • I have to ask have you ever been checked for lyme disease? It can show similar symptoms to fybro but unless you request the test for it often times doctors will skip right over it...hth
    Christina2008 10 Replies
    • November 6, 2008
    • 02:55 PM
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  • Please try this:My sister has 'Mixed Connective tissue disease' and has many of your symptoms. She has put her disease into remission with a strict diet by eliminating all dairy products and has become a vegetarian. She too was not diagnosed for a long time, even sent home w/ the flu a few times! Very, very frustrating! She has studied her body by trial and error with what she can or can't eat, and she swears this was the base of her being able to 'live life' again. Best of luck and don't give up.
    Anonymous 42,789 Replies
    • November 6, 2008
    • 03:23 PM
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  • As a nurse, I'd say there are a few simple things that you could do to manage your symptoms. First, it does sound like you might have Raynauds. I have this too and it's actually sometimes a side effect of certain medications but that doesn't mean you should stop taking those meds or change them. It's quite easy to manage. Just make sure you keep your extremities warm in cool or cold weather. You can also do things to improve circulation to your extremities - for instance I tend to do some exercises such as pushups, squats or even yoga. Daily exercise really helps decrease symptoms of Raynauds.Yoga can do wonders for most of those symptoms you mentioned in your thread and it will improve your ability to focus. Get yourself a yoga DVD and do it several days a week. If a certain pain is really hurting you, sit somewhere comfortable, preferably where there is some warm sunshine on you, then close your eyes and visualize the area. Visualize the muscles relaxing and imagine a soothing warmth easing the pain away. Focus on your breathing. Concentrate on breathing in through your nose and out through your mouth. Think about how the air feels cool on inhaling and warm and calming when you exhale. If you can use these breathing and visualization techniques daily for at least 10 minutes, you will start to feel empowered and learn how to manage your symptoms without medicine.I would also recommend that you start taking a daily multivitamin if you aren't already. You don't need tons of different vitamins to get the benefits, just take one daily multi and make sure you eat right. Try to get some good fats such as those from eating salmon, almonds, or walnuts. Eat protein with every meal. As for vitamin D deficiency, this is very common amongst Americans. So, get some natural sunlight everyday (in moderation of course) and make sure you drink milk or get your daily dairy dose. Drink 8 glasses of water per day - this can greatly improve your constipation, fatigue, and dryness. Above all you need to understand that the mind is very powerful. As tough as it may be to put on a happy face, you need to force yourself to start thinking positive and convince yourself that you have the power to heal yourself. If you are able to do all of these things I guarantee you will start feeling better. I'm not promising 100%, but your symptoms will become manageable. Do all of this for at least one month. Then if you still feel something is unbearable, talk to your doctor about it, but keep a journal of your symptoms and what brought them on and then he or she will have an easier time diagnosing you. Good luck, you can definitely do this!
    Anonymous 42,789 Replies
    • November 6, 2008
    • 05:02 PM
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  • WHat do you mean by you feel like dying?
    qwertyuiop123 453 Replies
    • November 6, 2008
    • 06:58 PM
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  • Hyperparathyroidism has nothing to do with the thyroid. Google it... Kiera
    Anonymous 42,789 Replies
    • November 6, 2008
    • 07:21 PM
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  • I was just wondering if you have lived in the same house all of your life, and if not how long have you currently lived in the house you are at now? I am 35 years old and live in South Carolina. I have lived here for 5 1/2 years. I have lived in my current home for 4 1/2 years. Approx. 6 months after we moved in I started feeling sick. A lot of my symptoms were very similar to what you are experiencing. I had every test known to man done and everything came back normal. I thought I was going crazy, I knew somthing was wrong, but nobody could figure it out. Finally last summer I found the cause. TOXIC MOLD in my house. We had a water leak under the master bathroom sink, they nobody knew about. it had contaminated our entire house including the A/C system. It has been an uphill battle, slowly but surely I am getting my health back, I don't know if I will ever be 100% again. Doctors are very uneducated in this field. Toxicologists are the trained experts in toxic mold cases. But as luck would have it, most insurance companies don't cover them, they are considered "EXPERIMENTAL".. I hope this might help you. It more then likely isn't toxic mold, but when you know are sick and can't get any answers, you can't leave any stone unturned. The best of luck to you...
    Anonymous 42,789 Replies
    • November 6, 2008
    • 10:53 PM
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  • have you tried fasting or going on a hypoallergenic diet for a while? i felt like absolute CRAP from the age of 8, and was told by tens of doctors that i was a hypochondriac and/or crazy and sent to see psychologists. i used to have joint pains so bad i couldn't sleep. i was taken out of PE and had to drop out of volleyball at 14 because my hip hurt so bad. i couldn't walk the mall at christmas to shop without being laid up for days. my stomach always hurt. i gained 50 pounds, then lost it (and more) a few years later. i lost hair. i had 10 canker sores at a time. i couldn't sleep, or i'd sleep for days on end. i went through periods of having to pee CONSTANTLY. my symptoms were so varied and seemingly unrelated, it's not surprising everyone thought i was crazy and/or making it up.anyway, after seeing a naturopath in seattle, i started doing elimination dieting to see if there were foods that were causing my symptoms. i know it might sound crazy, but after 4 years of close attention to how foods made me feel after i ate them, i have figured out which foods don't agree with me, and i am feeling perfectly fine as long as i stick to my diet. elimination dieting and hypoallergenic diets are not fun. but if you're as sick as i was, trust me, it's worth trying.hypoallergenic foods include lamb or chicken, and rice. if you don't want to fast you can stick to those for a few days and see if anything improves. google "hypoallergenic diet" and "food sensitivity" for more info. i hope this helps, and good luck.michelle
    Anonymous 42,789 Replies
    • November 6, 2008
    • 11:06 PM
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  • Do you take any medications?
    qwertyuiop123 453 Replies
    • November 6, 2008
    • 11:25 PM
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  • Do you take any medications? No I dont take any medications. All Im taking is a multivitamin, Vitamin D, and Omega 3. One pill a day for each. I seem to be improved a little from taking those vitamins though. I didnt start taking them until about 4 months ago, and Ive been feeling really bad for the past year and nearly up to 6 years now. I meant I feel like Im dying. I feel like Im fading away and everything is moving away from me. I just feel like I have terminal cancer or something and Im bed ridden-kind of dying.
    HelpinOhio 32 Replies
    • November 7, 2008
    • 10:44 AM
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  • No I dont take any medications. All Im taking is a multivitamin, Vitamin D, and Omega 3. One pill a day for each. I seem to be improved a little from taking those vitamins though. I didnt start taking them until about 4 months ago, and Ive been feeling really bad for the past year and nearly up to 6 years now. I meant I feel like Im dying. I feel like Im fading away and everything is moving away from me. I just feel like I have terminal cancer or something and Im bed ridden-kind of dying. Hey. Hang on in there mate. Sounds like your going through a very similar time to me & i also have/had many of your symptoms. I'm in my mid 20's and started developing a lot of them about 4 years ago (all started after a really bad cold). They seem to be getting more frequent lately too. I've been tested for everything the doctors can think of (3 times for some conditions) & everything has come back completely normal. Would really like to hear in more detail about your symptoms & maybe we can see if we're suffering from the same thing. Any way we can swap e-mail addresses? Thanks in advance.
    BRANDNEWSTART 4 Replies
    • November 7, 2008
    • 00:00 PM
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  • Have you had hearing tests, vision tests, etc? what tests have doctors done on your eyes and ears? Have they given a name to the ringing in your ears such as tinnitus? Tinnitus: A continual ringing sensation occurring in one or both ears. Do you have to wear glasses or contacts, is your vision significantly or slightly impaired, what is your vision? (20/20 20/40 etc?)
    qwertyuiop123 453 Replies
    • November 7, 2008
    • 11:17 PM
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  • Have you had a head ct, xray, or mri?
    qwertyuiop123 453 Replies
    • November 7, 2008
    • 11:25 PM
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  • Do nosebleeds run in your family?
    qwertyuiop123 453 Replies
    • November 7, 2008
    • 11:26 PM
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