Discussions By Condition: I cannot get a diagnosis.

I'm as close to dead as you can get with a pulse, please help.

Posted In: I cannot get a diagnosis. 65 Replies
  • Posted By: Lindsayx12
  • January 3, 2007
  • 05:58 AM

This is continued from Dec. 13, 2006. I am getting worse daily. In a nutshell:
*I have hypothyroidism (and take Levoxyl) but still have every symptom
*I have idiopathic hypersomnia (being re-tested for narcolepsy because i cannot move when I wake up, not a muscle. I also try to get help but can only make noise, no words). It is like being paralyzed.
*I have diabetes type 2, but I am not overweight. I can't lose weight either. It is diet controlled.
*My lower back and neck are extremely stiff and painful. I cannot turn my head far to either side and you can hear it crack. I cannot look up or down very far. I cannot touch my toes and I used to be a ballet dancer.
*I 'sigh' constantly like I'm 110 years old. I can't walk up three steps without cramping in my legs or burning pain.
*I used to lift weights and I can barely lift a laundry basket
*I can't stay awake!!!! 16 hours of sleep and I will have to go back to bed shortly. I'm not 'kind of tired', I have seconds before I'm out (I'm on 120mgs of adderall and 15-20 of Ritalin (Ritalin is new for me). I'm taking an extra dose a day and still can't stay awake.
*I can't remember from one minute to the next.
*I don't go to the bathroom without laxatives and I no longer get my period. (I'm only 42)
*I have Raynaud's(hands, feet and nose are freezing). My hands are all cracked, my nails have vertical ridges and I am covered in bruises and cuts that don't heal. I have dogs but no one else has bruises but me.
*I am not depressed, I'm *****d off because I can't find out what is wrong.

I have lost ten years now and I don't have a job. It was hard enough to hold on to one when I was feeling badly, but getting one feeling like this is awful. I am 100 percent career person. No family of my own. Now no home, life, money or health insurance either.

My parents are ultra-conservative and think Adderall is a 'bad' drug. It doesn't even keep me awake. I went off of all med's and I had to go back on the adderall or I wouldn't be up even an hour. I stopped depression meds with no problem.

PLEASE, PLEASE help. My family thinks I need a psychiatrist but mentally (except for the memory problem) I am very tough and want to get better immediately. Someone suggested it might be Hemochromotosis. My doctor blew that off and Wilson's Temperature Syndrome (my temp is 94 to 96-7). I feel horrible. My friend who's basement I live in now (good luck getting a date, right?!), thought I was dead the other morning. No one could wake me. This is really scary and I feel like I've got a week left in me of this max!

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65 Replies:

  • Did you have a head injury? before the symptoms started? If not, still may be worth a neuropsych evaluation witha a neuropsychologist to evaluate cognitive functioning etc. . . to see if there was some sort of traumatic brain injury or something along those lines. Just a random thought. . .Have they checked the functioning of your pituatary levels? I have some similar symptoms that you mentioned and my thyroid kept showing okay but it was my pituatary levels that were not okay because it kept looking like graves disease until a smart doctor checked every thing in the endocrine system and finally found something because I really thought I was going to die if someone did not find something. I never knew about D1, D2, D3 and D4 levels in the pituatary.Have you tried an endrocrinologist?
    Anonymous 42789 Replies
    • January 3, 2007
    • 07:46 AM
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  • get tested for yeast/fungi in your intestines.take a high quality vitamin, mineral, flavonoids, trace supplement.stop eating sugar, processed food, milk, processed condiments, pastries.*******do not eat any type of artificial sweetener********you seem to be having some kind of colon/intestinal toxicity.eat lots of fresh fruits, veggies, boiled tubers (yams, french beans, spinach, collards, chayote squash).go to beyondhealth.com read the articles and listen to the audio files.Be Well!
    Anonymous 42789 Replies
    • January 3, 2007
    • 06:59 PM
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  • Have you had your LFT's (liver function test) tested lately? If so, what were the results?
    Anonymous 42789 Replies
    • January 4, 2007
    • 02:25 AM
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  • Did they ever check you for Fibromyalgia? some of those symptoms are symptoms of FMS, go to a reumatologist, have them check. they can do a trigger point tests.
    Anonymous 42789 Replies
    • January 4, 2007
    • 04:53 AM
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  • What do you eat?
    Azaral 152 Replies
    • January 4, 2007
    • 05:37 AM
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  • Yes, what do you eat?
    springmonster 3 Replies
    • January 4, 2007
    • 08:48 AM
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  • Demonic possession. This is where the disease is coming from. I have it and I'm dying. I had an esoteric bath and the demon of death came onto me. Sorry, no one will believe you about demonic possession. Ask the Lord for forgiveness and surrender your soul and spirit to ****s, NOW.
    Anonymous 42789 Replies
    • January 4, 2007
    • 06:44 PM
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  • this is why I hate this board!!!! People come here because they are in pain! They know something is physically wrong, OK there might be some folks here that may need to check in with the depression medications to keep on track but that also is a bona fide illness. I too am a child of our Lord, ***********t. But I don't beleive I just need to go to church and all will be well with me! Will these fanatics please keep your replies to "may god bless you" and be done with it!:) As too the person that posted, I hope that you heed some of the advice given previous to the devil taking over.LOL I think seeing an endocrinologist would be in order considering your health history.Good Luck
    kitkat2 17 Replies
    • January 4, 2007
    • 08:12 PM
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  • I haven't read all the replies yet, but had to post. Get a RAST blood test for food allergies. I found out 4 years ago that I was allergic to garlic. Before I stopped eating garlic, I could sleep 18 hours a day. The most I ever slept was 27 hours over a weekend. If I accidentally ingest any garlic now, I practically go into a coma that lasts for 8-10 hours. Nobody can wake me! I'm not saying you specifically are allergic to garlic. Perhaps it is another food. Good luck!
    dharmabummer 4 Replies
    • January 4, 2007
    • 11:03 PM
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  • Can't thank everyone enough. I am preparing to go to the ER next week when my symptoms are at their worst (evidentally the only way here to get all the specialist in the same place at the same time). I'm done, and can't go on. Your replies are helping me to ask myself the right questions. Head injury: Two I can remember but didn't have a concussion. I did have a deviated septum fixed at age 17 where they broke my nose twice in the operation. I had such severe bruising I had to enter through the back door of the doctor's office so I didn't frighten anyone. It took a year for the bruises to go away. Liver Tests: not in depth ones. I have been a wine drinker for years but I don't even do that anymore. I had tests done so I could take Lamisil and that test was okay. Yeast, fungal infections: Both. I looked into Candida but my doctors don't believe in it. Fibromyalgia: Diagnosed with it but still my meds don't keep me awake and I think the Fibromyalgia is part of my pain but why can't 90mgs of Adderall and 20 of Ritalin keep me up. It has got to be something. RAST blood tests: Interesting about the garlic. I used to eat it but even the smell makes me sick now. What I eat: I am usually a high protein and vegetable eater. I was a super health nut but now I don't have the energy or desire to eat much. Fruit, vegetables, yogurt and bland foods are all I can really tolerate now. Demonic Depression: Sorry, I'm kind to a fault and a fighter and resilient when it comes to adversity. You might check in to the background of the people who suggested that you are possessed (or whatever) by demons. They are the ones who probably have something to hide. Please be a little kinder to yourself;I'm sure you deserve a better diagnosis and better friends. Thanks for your help anyway. ????Something new: I am always short of breath. My friend who is helping me pointed this out. I am often gasping for air when I pick something up or walk up a few stairs. I'm not overweight and I don't have asthma. ????Does anyone know if Lyme disease or Hemochromatosis can cause severe neck and back pain and breathing problems? My eyes cannot move side to side without pain either. ????Are there disorders that would cause my medicine not to be absorbed enough to be effective?
    Lindsayx12 29 Replies
    • January 5, 2007
    • 08:33 PM
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  • I'm not an expert or anything but I do very much understand your symptoms, as my boyfriend who was otherwise healthy before getting ill has become (over 4 years) completely disabled with similar problems. He is going into the hospital next week for the same reason you mentioned - so that all of the specialists can be in the same room at once. He cannot digest foods, has joint pain/arthritis and swelling, he has difficulty concentrating and breathing, and has complete numbness/coldness in his extremeties. What triggered me to reply to you was that you mentioned absorption problems, which is what I think is key to his problem as well - and the doctors are looking into Whipples disease which involves absorption difficulties and has many corresponding symptoms that you described. They started him on antibiotics because they don't know his diagnosis and he doesn't seem to be absorbing them, so that's where he's at. Hope it helps you to know there are others who are in a similarly helpless position (he often speaks of the loneliness of such an illness). Good luck to you.
    Anonymous 42789 Replies
    • January 6, 2007
    • 03:30 AM
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  • You mentioned you live in a basement apartment? Please do the following tests:1. toxic mold. This can be extremely debilitating and cause lots of your symptoms. The more you spend in a toxic environment the worse you will feel.2. Radon. If you live in a Radon belt you need to check this - it is highest in a basement!3. Carbon Monoxide. This could also slowly be poisoning you. I really feel you may be living in a toxic environment. Have you tried visiting other people and/or staying away from your home? There is obviously more happening than this, but I think it might be worth checking out.Hope this helps,Doctor of Oriental Medicine
    acuann 3080 Replies
    • January 6, 2007
    • 03:55 AM
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  • I totally agree with the Doctor of Oriental Medicine.The Phases of leaky gut syndrome and how it produces malnutrition is an interesting thing to read from this link.http://www.mdheal.org/leakygut.htm
    Anonymous 42789 Replies
    • January 6, 2007
    • 04:20 AM
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  • I was treated for Lyme's Disease, and from what I understand it can manifest in an array of symptoms (sometimes classic, sometimes not) - so it is worth at least asking your physician about. However, I know I had a high fever, which contradicts your current symptoms - - still I'm very concerned about your health and ask you to act promptly.As a mental health practitioner, I would encourage you to also write down your feelings on a daily basis and re-read your entries as I've witnessed this to help with frustration and tension in cases of chronic illnesses. You are obviously a fighter, and won't lose hope. Best wishes!
    Anonymous 42789 Replies
    • January 6, 2007
    • 04:49 AM
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  • It is obviously complex. Could be Lyme but traditional medical testing on Lyme is about worthless.This is my first time on this site. Can personal messages be sent?Where I am heading with this is finding out what area of the country you are in and referring you to a good natural health pro in your area. If you are interested. I have been in the field for 20 years and know some in different areas of the country.
    Anonymous 42789 Replies
    • January 6, 2007
    • 05:06 AM
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  • I don't have an answer for you, but my husband has been ill for 4 years and is still undiagnosed. His symptoms have rendered him completely disabled. What caught my attention was your comment that moving your eyes hurts. My husband has the same problem. His neck and back are so stiff he can't move. On some days he can't even move his eyes up and down or side to side. Having been an outdoorsman, he has been tested for Lyme 4 times We have since learned that tests are often worthless in a diagnosis for Lyme and good luck getting a doctor to give you antibiotics if you don't have "typical" symptoms. Doctors at the Mayo Clininc can see that he is ill but don't know why. One doctor there commented that his best guess is that there is a central nervous system disorder going on. He is a fighter much like you and I am amazed at his will to live after all he has been through. Good luck to you. Please know that you are not alone in your need to find an answer.
    Anonymous 42789 Replies
    • January 7, 2007
    • 02:05 AM
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  • That high protein diet is the key.Go 80% raw (mostly veggies, fruits, and nuts)That much protein is toxic. Protein in excess is a factor of intestinal permeability.
    Anonymous 42789 Replies
    • January 7, 2007
    • 03:44 AM
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  • I am not a doctor and will be of no help with diagnosis, but since I've gone thru similiar will offer you what I learned. You've already started to do your research and learn about your body. However, do not ever go into a doctor and say 'I read an article on the internet'. Result is likely to be instant hypochondriac rubber stamp.If you have had a complete medical workup and are resonably confident that your tests did not find any tumors, vascular problems in your brain or arteries and all your internal organs are functioning normally, then relax a little. You are not likely in life threatening danger, unless something horribly obvious has been overlooked. If you are in the early stages of something bad, it will, unfortunately, show itself eventually.Consider appeasing your parents and signing up for mental health treatment (and no, I am not suggesting your problem is in your head). However, to seek this type of treatment out on a proactive basis accomplishes several things, especially if your parents are willing to pay for it (you said health insurance was gone) 1. You would be showing your doctors (& your parents) that you are open to anything that might help you get better. 2. It can't hurt you and it might help some because dealing with a debilitating illness can lead to depression, frustration and emotional issues where none existed before. 3. Mental health pro's are usuallly a little quicker to spot side effects from the ADD drugs like Ritalin and Adderall. You did not say if the 'waking up paralyzed' started before or after you began these drugs. They alter your brain chemistry and can cause some folks all kinds of problems (know where of I speak...raised an ADD child), having tried a round of Statera myself, they do not have the same effect on people who do not truly have ADD. 4. After awhile when the therapist realizes your illness is not physcosomatic, you may get a better referral to appropriate specialists without having to carry the 'hypocondriac' label with you. Frequently mental health professional will try harder to help you find resources for treatment when you have no insurance. Don't know where you live, but in some places a minimum level of mental health care is available through your county health department. Consider asking your pharmacist for the Synthroid brand of thyroid replacement hormone when you get the next refill. I am unable to absorb generic levoxyl for some reason (generics are not always the same for all people). Consider switching pharmacies. Bogus drugs are out there. (my son's blood pressure medicine was recently discovered to be sugar coated ground cardboard, and it was filled at a major chain store). If you haven't had your blood tested lately for the TSH level ect., then it likely should be done. (Some county health depts will do this for a small fee or free.Have you had anthesia, sedatives or muscle relaxers in the recent past? The experience you described of being awake but paralyzed can be cause by these. Your mind is awake and conscious, but your body is still asleep. This can occur periodically for several months following general anthesia. Had it myself, scary thing. It is a small glimpse of what being in a coma must be like. Can you afford to go to a sleep lab, where they admit you for a couple of nights and EEG, ect your brain while your are sleeping?If you have not yet applied for Social Security Disability, then get the application going. You can usually find a lawyer to help with this without paying up front. It is a difficult and frustrating process, so don't go it alone right now. Sometimes the lawyer can also help you find medical care that can be paid when your benefits begin or at a lower cost.If you have to go into the hospital, be sure to ask if there are programs for the insured and low income. Almost every hospital that accepts federal and/or state funds has to have such a program for the 'medically needed'. However, unless you are an illegal alien, it may not be offered unless you ask.Some states also have Vocational Rehabilitation that will help with medical treatment with goal of helping your return to work. This often hard to find.Call whatever the equivilant office of Children and Family Services is for your State and ask about resources.Is there a major research or teaching hospital near you with a neuro pysch department? Check for research studies and the like that might offer free care. These dr's are sometimes more interested in taking hard to diagnose cases.As for the the bruising. If your blood work was all normal, then a fairly high dose of Vitamin C might help with it. If you have been limiting carbs for a long time because of the diabetes you might have some nutrient difficiency issues. Have you had a blood test for B12 deficiency? Pernicious anemia? Have you been worked up for auto immune disease?As goofy as this going to sound, I have had some improvement from self hypnosis and bio feed back techniques and have seen this work for others. For this to work, you have to believe it will, your subconscious mind believes what you tell it, and there is power in positive and negative thoughts. Spend a little quite meditative time literally telling your body to heal itself. There are some good books on the subject if you want to try it. (It can't hurt). (You might also tell the demons to leave you alone in these sessions ...I'm kidding). Too bad about the lousy demon post. That was a really awful thing to say to a sick person (or a healthy one for that matter). Faith in a higher power never hurts, but in my experience the powers of the universe help those who help themselves.Good luck and keep us updated. Your plight seems to have struck a cord with a lot of people. I know I read your post this morning and you were in my thoughts all day, enough so that I got up to write this to you at 2:00 am (my sleep issue is only somewhat better). Please don't give up.
    Anonymous 42789 Replies
    • January 7, 2007
    • 07:10 AM
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  • Please, at least be open to going to an Acupuncture Clinic! (Your Dr. may not approve, but it is YOUR BODY AND MIND AND YOU HAVE THE RIGHT TO WHATEVER CARE YOU FEEL IS RIGHT. (He doesn't even believe in candidas?) There is plenty of proof that yeast IS A REAL PROBLEM IN THIS COUNTRY) I personally would question HIS JUDGEMENT AND ABILITY TO ABSORB FACTS and seek another more open minded and informed opinion, but anyways, I am a student at an Acupuncture Clinic and it is SOO REWARDING being able to help these patients feel better. Eastern Medicine approaches dis-ease differently. It addresses the ROOT OF THE PROBLEM and brings balance back to the body. It helps DETOXIFY the negative effects of many RXs on the liver and kidneys and works to HARMONIZE THE WHOLE BEING-BODY,MIND & SPIRITwith herbs and formulas, etc. We see people that have been to every MD. imaginable and they are just worn out. They come to us as a LAST RESORT and when you can help someone who has been misdiagnosed for YEARS, or been in chronic PAIN, it is all worth it!!! We help people with joint pain, fibro, asthma, emotional scars, YOU NAME IT- We see it walk in our door. And nine times out of ten- when they leave- they feel better and they look forward to coming back for more! Good wishes for your healing;)
    1111healer 106 Replies
    • January 7, 2007
    • 07:38 AM
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  • I would absolutely second the suggestion of 1111healer. It is time to look at your health challenges from a different angle and CM is a great way to go. And 1111 I did review some of your posts and it is great you are studying Acupuncture and Chinese Medicine. Here in OH some MDs have become aware that acupuncture can actually help some people, so they often hand out prescriptions when asked. Yup, can only be done here by MDs (even if they do not have training) and by massage therapists with training and the prescription is from an MD. I guess the Medical Board feels the public is too dumb to help make decisions about some of their health care. They are "protecting" the public, right? Ever heard of BioMeridian Stress Assessment, using bioelectrical impedence to measure meridian stress ? If so, would love your opinion / insights etc. Thanks
    Anonymous 42789 Replies
    • January 7, 2007
    • 02:42 PM
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