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. 12 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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12 Replies:

  • I can't help with some of your other symptoms, but your excessive sleepiness and inability to stay awake and function are very familiar. Because I had previously suffered a head injury, I was diagnosed with post-traumatic hypersomnia (despite the fact that I was having the sleep symptoms before the injury.) After a second sleep study, I was diagnosed with narcolepsy. There is one medication, Provigil, that is effective for narcolepsy. It is the reason I can work and lead a normal life. Insurance companies restrict the dosage they will pay for because it is expensive, but I need twice the normal dosage and, with proper documentation, they approve the higher dosage.Good Luck!
    Anonymous 42789 Replies
    • February 12, 2007
    • 10:43 PM
    • 0
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  • You might have something along the lines of CFS (Chronic Fatigue Syndrome, also known as ME). Unfortunately this is one of those things that is diagnosed by ruling every other possibilty out and as far as I know there isn't really much in terms of medication etc... I can only go on what I've heard mind you... If you are narcoleptic then Provigil might be a step forward for you, however if you start getting any kind of side-effects from it I think it's very important you stop it as soon as possible as I have heard of quite a few problems that it can cause... Once again only speculation but I hope it helps! Let us know what happens! :)
    Tarwenamin 6 Replies
    • February 12, 2007
    • 11:36 PM
    • 0
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  • Have you looked at bacterial infections?
    Anonymous 42789 Replies
    • February 14, 2007
    • 03:04 AM
    • 0
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  • Wow, your immune system sounds like it is totally shut down! I am sorry I cannot offer you any other suggestions for diagnosis, except perhaps leaky gut and candida overload...this causes a huge array of symptoms, and is hard to diagnose. www.candidasupport.org and www.wholeapproach.com are two good websites on candida - it is SOOO much more than getting yeast infections...may not be the cause, but could be an underlying problem contributing to your symptoms. The very best immune enhancing supplement I have found (and I have tried EVERYTHING) is called INTRAMAX. It is only sold through healthcare practitioners, but I think you can find a practitioner through their website www.druckerlabs.com. I have a patient with fibro, Hep C, severe asthma, and loads of other problems who has just started this supplement. It is very expensive, but I got her a special deal since I believe this will help her so much. She called me yesterday and said " I just vacuumed my house! You have no idea - do you know the last time I vacuumed my house?!" This stuff is simply the best on the market - takes 40 days to make one bottle, and is extremely hypoallergenic and vegetarian. can't recommend it highly enough. I am only take a few teaspoons a day and feel fantastic!Sometimes when you are presented with a mysterious puzzle of immune deficiency problems, taking a super supplement may really help. They have much fewer side effects than western meds. Best wishes,DOM
    acuann 3080 Replies
    • February 14, 2007
    • 04:03 AM
    • 0
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  • I worked with a gentleman who was on disability for two years. He had diabetes, hypothyroidism, had a weight problem, fatigue. After two long years he found a doc in Boston who diagnosed him with Cushing's Disease, or a benign tumor of the pituitary gland. Had surgery to remove the tumor, diabetes, hypothyroidism, fatigue is gone. He is back at work very healthy, and half the size he used to be. Good luck. Hope this helps.
    Anonymous 42789 Replies
    • February 14, 2007
    • 06:51 PM
    • 0
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  • Hi, I'm only going to touch on your hypersomnia. Read up on Sleep-Paralysis. It describes your symptoms: Not being able to move a muscle when you first wake up, trying to call for help but not being able to. It fits it perfectly in fact. Two websites for you below: 1) watarts.uwaterloo.ca/~acheyne/S_P.html 2) en.wikipedia.org/wiki/Sleep_paralysis Good luck!
    Anonymous 42789 Replies
    • February 16, 2007
    • 06:51 AM
    • 0
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  • Is it possible your going through a thyroid storm ? You need to get to an emergency room. Also do you have SSD or SSI ? If not I would get signed up for them andget to your local family services and get assistance for your medical bills.Till you get this figured out. Good Luck to you.;)
    dawns6 29 Replies
    • February 17, 2007
    • 00:34 PM
    • 0
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  • I have to say that a candida overgrowth sprang to mind as accuan suggested. Hemochromotosis should have shown up in blood tests. It is also hereditary (has anyone in your family had it?). Wilson's Temperature Syndrome is not really a recognised disease. Hypothyroidism would give you a low body temperature as would chronic fatigue. Have you had blood tests and what were the results? Why do you say you can't lose weight if you are not overweight? Probably the single most important thing you can do is eat properly. You say you have Raynaud's disease, but has this been diagnosed (or have you just got cold hands and feet)? Your nails could suggest a problem (iron deficiency) but then again they might not. This is something that needs checking properly (especially as you think you might have hemochromotosis). The slow healing cuts and bruises can be caused by diabetes. Sorry for all the questions, but it is important to try and figure out exactly what might be going on. Otherwise, it is just shooting in the dark. I have to say that the drugs you are taking might keep you awake for a while but they aren't going to cure you. They might also be disrupting your natural sleep. Regards Kenn
    Anonymous 42789 Replies
    • February 17, 2007
    • 02:05 PM
    • 0
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  • I am sorry I can't do much more to help, but here goes. For Raynaud's syndrome, ask your doctor about calcium-channel blockers, alpha blockers, and vasodilators, which may be able to help. However, Actifed, Chlor-Trimeton, Sudafed, beta- blockers, and birth control pillls can aggravate your condition. Also, if you smoke, really try not to, as that can also worsen it. I don't really have a reason for why Levoxyl isn't helping your hypothyroidism; however, if you recently started taking the medication, it takes around a month or two for it to really kick in and you to start feeling normal again. For idiopathic hypersomnia, avoid alcohol and medications that can affect sleep. Make sure you get enough sleep at night. Talk to your doctor about Modafinil(Provigil) or Methylphenidate (Ritalin) to treat it. This might make you laugh, it did to me, and laughter is a powerful healer as well. http://www.youtube.com/watch?v=kFX3I209LVM God bless you, good luck, keep hanging in there, and never give up.
    Anonymous 42789 Replies
    • November 18, 2007
    • 01:25 AM
    • 0
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  • My mom had all the same symptoms, thyroid issue, raynauds, everything you listed and it too was suggested to be in her mind and went undiagnosed for years. At sixty years old, she had a TIA (small stroke) and her finger became necrotic...the tip turned black and died. By this point, the doctors found blockages in her heart, now its too bad/late to operate, and she has vasculitis. The doctor suggested she may not have ever had a thyroid condition, just misdiagnosed heart problem and vascular disease. This is a common experience for women. The actual tests aren't ordered as readily for women, as they are for men. The doctor kept her on the synthroid for thyroid, because the body cannot regulate itself after years of medication and she takes heart/blood thinner meds now. The EKG stress test for heart is not good enough, she "passed". Vascular doctor, angiogram, ct scan, pet scan keep testing, testing, testing...until you find the answer. I hope the person above comes back to this sight and reads this, or it can help someone else before its too late.
    Anonymous 42789 Replies Flag this Response
  • I am only 36 and I have got similar problems. My Tongue was blue my neck was stiff and extremely painful all my muscles were stiff and painful. No matter how much I exercised or tried to be normal my body was so weak and I use to have naps throughout the day. I had had enough and I went to the Chinese Doctor they did Acupuncture, Massage and cupping and I would have to drink the horrible herbal tea every single day.I still am going to the Chinese Doctor it has been 8 months and I still drink the horrible tea. But there has been a lot of improvement• My neck is better now but I still have low blood pressure, my tongue which was blue is looking a bit normal now. I had spots all over my face which have improved so much. I was having my period for one day now I have it for two days. • I do have stomach problems my food does not digest well no matter how little I eat so I am always bloated. But the Chinese medicine is really making me better.• They say I have run out of Qi body’s vital force. • It will take time but I am definitely getting better.• My neck still clicks when I move it but it does not hurt anymore. The Chinese massage is very good they just know what buttons to press.Good Luck.
    Anonymous 42789 Replies
    • November 12, 2008
    • 00:56 AM
    • 0
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  • Get yourself to a quality alternative practitioner. I suffered for YEARS with on-going illness. MD's know nothing about chronic illness. They are as well as the rest of us. I would suggest a naturopath. Trust me! 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!
    Anonymous 42789 Replies
    • February 21, 2011
    • 00:12 PM
    • 0
    Flag this Response
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