Discussions By Condition: I cannot get a diagnosis.

My daughter needs a diagnosis and can't get one

Posted In: I cannot get a diagnosis. 15 Replies
  • Posted By: Sharon Kay
  • November 9, 2007
  • 08:21 PM

I am here to try to help my daughter find some answers to her ongoing illness which the doctors don't seem to understand. I'm hoping that the information I post here might possibly help us finally get to the bottom of what is wrong with her and possibly give her a fighting chence to regain her health and get her life back again. Any and all suggestions are very welcome.
For privacy's sake, I'll call my daughter Sara, which is not her real name. Sara is 29 years old. and up until this all began, she had lived most of her life relatively healthy other than a bout with what was believed to be pneumonia when she was about 6 years old and an occasional cold or flu later on in gradeschool. About a year and a half ago, Sara went from being a happy, healthy young woman to becoming ill, experiencing one strange symptom after another within was probably a timespan of around a month or two. Rather than trying to put all of her symptoms together in chronological order, I will start by simply listing her symptoms in the order they come to mind in order to give you a general idea of what has been going on with her. I would guess that she has now been seen by a total of around 8 or 9 doctors of various different specialties in the last year and a half, but so far none of them seem to be able to tell her what has gone wrong in her body and have only been able to attempt to treat some of her symptoms with a very limited success rate at this point.

Sara's primary symptoms: dizziness (fairly chronic), headaches, muscle spasms in her neck and back, chronic lower as well as upper back pain, upset stomach and occasional diarrhea, sharp recurring pains in the upper portion of her stomach, loss of appetite, alarming weight gain despite eating very small amounts of food, insomnia, nightmares, and generally non-restorative sleep, extremely high heart rate (sometimes over 150-155 beats per minute while wearing a monitor even though she is currently taking a beta blocker), extreme fatigue, feeling like she is going to faint, very painful acid reflux even while taking Prevacid, chronic congestion(sinus), and what appears to me to be bloating and swelling of her face and extremeties which comes and goes from day to day despite low sodium intake and limited diet. She and I live togehter and eat a lot of meals together and we both eat a pretty similar vegetarian diet, and we both take a women's multivitamin along with B-12 every day, and are both pretty careful about our diet, so I know that her diet should logically not be contributing to her problems. Sara is 5' 4", has a very petite frame, and normally weighs around 120-125, but since the onset of her symptoms, she has steadily gained weight and is unable to lose any of it along the way. The last time she was weighed at the doctor, she said her weight was close to 200 pounds, although she didn't want to say what her actual weight was because she was so upset about it. The extra weight and the frustration at not knowing what is causing it is of course making her feel even worse than she already does with the illness, and I can tell that her emotional state continues to decline a little each time she sees a new doctor who can not give her any real answers. Sara used to enjoy simple forms of exercise like walking in our neighborhood or hiking in the woods, but since she became sick, she no longer has the strength or the initiative to try to do much of anything. I am terribly worried about both her physical as well as her emotional state, and feel very helpless to do anything to help her. I hope that maybe someone who reads this post will be able to offer some help or insight. Thank you in advance for anything anyone here might feel would help us to solve this unhappy mystery and help my daughter get her life back.

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  • Have they checked her thyroid? The weight gain makes me think of thyroid. Oprah has a thyroid problem and you can tell she has gained her weight back.I've been sick since I was about 32 and my blood work is just now showing that I have a thyroid problem. Of course, technology is a lot better now.I also have a vitamin D deficiency and I take a super multivitamin. Have they checked her vitamin levels? I have always had a low salt intake and now I find out that low salt intake equals low iodine, which is really not healthy, as it can cause thyroid problems. Insomnia, weight gain, extreme fatigue, dizziness, high heart rate and headaches can be related to thyroid problems.You are going to have to troubleshoot her health. She is obviously having some stomach issues. IBS, Crohn's????? Health starts in the stomach.
    hayley3 11 Replies
    • November 9, 2007
    • 10:36 PM
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  • hey sharon, really sorry to hear of your truble! my names john im a student nurse here in ireland! i can actuly relate to most of your daughters symptoms the fatigue, insomnia, sinus, the back pain, the diahrrea, dizzyness, gassy feeling in the pit of the stomic is how id describe it. and some of the other symptoms which iv just forgot, i am also on a beta blocker (50mg atenolol). but basicly im thinking some sort off heart symdrome now it sounds worse than it actuly is but i would order an urgent tilt table test (prolonged) and also an extended haulter monitor and blood pressure monitor for 48 hours and maybe a stress test these are all tests for the heart when diffrent factors effect its performance, personnaly from my own experence i think these tests will show some very interesting results i also tink sara should introduce more salt into her diet it may actuly help. so basicly my own opinion of her symptoms is a symdrome called POT's (Posdural Orthrastic Tachycardia symdrome) or a from of this symdrome and surprise surprise beta blcokers are one of the many treatments for these symdromes. and may i add i have the above mentioned condition. i hope to hear a reply back soon best of luck and take care. x
    Anonymous 42789 Replies
    • November 10, 2007
    • 00:07 AM
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  • Have they checked her thyroid? The weight gain makes me think of thyroid. Oprah has a thyroid problem and you can tell she has gained her weight back.I've been sick since I was about 32 and my blood work is just now showing that I have a thyroid problem. Of course, technology is a lot better now.I also have a vitamin D deficiency and I take a super multivitamin. Have they checked her vitamin levels? I have always had a low salt intake and now I find out that low salt intake equals low iodine, which is really not healthy, as it can cause thyroid problems. Insomnia, weight gain, extreme fatigue, dizziness, high heart rate and headaches can be related to thyroid problems. You are going to have to troubleshoot her health. She is obviously having some stomach issues. IBS, Crohn's????? Health starts in the stomach. Hayley,Thank you so much for your response. I really kind of messed my post up yesterday and kept trying to repost an addition to it because I forgot to include some pretty important symptoms, so now I have two posts about the same thing going here. I'll post the rest of what I was trying to add below- Hopefully this can be added, as there are some symptoms my daughter (whom I am calling Sara) has that I failed to mention in my original post-Sore and swollen tongue and mouth, which was treated with a topical cream which did not help at allfeeling of not being able to breathtightness and feeling of swelling in throat which makes her feel like she is chokingan odd lump which never goes away on the right side of the base of her neck (it is often sore)I think the thyroid thing has a lot of possibility. I was treated for thyroid problems as a kid, although I've never been clear as to whether or not it was high or low (from what my mom remembers, she thinks maybe high, although my symptoms were more in the low range, I'm pretty sure). You said you were just recently diagnosed with thyroid problems...I was wondering how many years it took before it started showing up on the tests? She has had her thyroid tested and the tests didn't show anything, but I'm curious as to whether or not that kind of thing can be hard to correctly diagnose? As for the vitamin deficiency, I was suspicious of low B-12 since we are vegetarians, but at my urging, one of her doctors was kind enough to run new tests for vitamin deficiency, and they said the tests were alright. As for the salt in her diet, I think maybe the amount she gets isn't really as low as I think it is; I think I was just kind of thinking about the fact that she had tried to cut down some on her salt intake as she used to put too much salt on her food, but she does eat foods with added salt, and I always make sure that the salt I keep at home has iodine added to it. An internist that she saw recently told her that they suspect that her chronic sinus congestion stems from her stomach problems, which I was surprised about until she explained to me how that can be a contributing factor. In about a month from now, she is scheduled to have a test done where they put a camera down her throat to look at the upper area of her stomach where she keeps getting the sharp pains. She is pretty nervous about having this done, but I read that it's usually a safe procedure and shouldn't be too ******n her. I just worry because she seems so fragile and it seems like the littlest things can cause her to feel even worse, but I guess it's something they feel needs to be done. I have heard of Crohn's disease but don't know anything about it. I will do some reading on it and see if it might sound like a possibility for her. Would it be unusual for someone her age to suddenly develop IBS without any prior problems similar to that? Thanks again for your response, Haley. I'm glad that you finally got some answers for yourself and I hope that now that you know what is wrong you will continue to improve and recover your own health. I will post again if anything with my daughter changes or we learn anything new from her doctors. Sharon
    Sharon Kay 8 Replies
    • November 10, 2007
    • 03:34 PM
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  • Hi Sharon,In my case the thyroid was hard to diagnose. It took at least 11 yrs for me. My thyroid test just came back normal again, so I think I am going between hypo and hyper. My thyroid is an autoimmune thyroid problem and maybe they are harder to diagnose, I don't know. Maybe hers is autoimmune too. The weight gain has to be thyroid. Crohn's disease you would lose weight. IBS can occur suddenly. Vitamin D is good for immune problems. How much vitamin D does she take? I think I read 1000 iu is the new standard.What does chronic congestion have to do with the stomach? Never heard that one.Have you done a google search on the sore and swollen tongue? I have no clue what that could be unless it was an allergic reaction. I've done research since my brother died of cancer (10 yrs ago), and the main thing that I learned in all these years is that you have to eat to reduce inflammation which means to eat similar to a diabetic diet. No sugar, no starches. Just protein and vegetables. I also believe in fasting thru juicing. When my stomach got really bad, I did a juice fast and it really helped. I think my missing link was the vitamin D, but only time will tell.Good luck!Susie
    hayley3 11 Replies
    • November 10, 2007
    • 09:28 PM
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  • Sounds like some it may be a goiter. Go see an endocrinologist.
    Monsterlove 2921 Replies
    • November 11, 2007
    • 02:11 AM
    • 0
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  • I posted a reply to this post, but it's not here. Will try to remember what I said and repost later. Darn.....Who knows where I put it. LOL
    hayley3 11 Replies
    • November 11, 2007
    • 05:20 AM
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  • hey sharon, really sorry to hear of your truble! my names john im a student nurse here in ireland! i can actuly relate to most of your daughters symptoms the fatigue, insomnia, sinus, the back pain, the diahrrea, dizzyness, gassy feeling in the pit of the stomic is how id describe it. and some of the other symptoms which iv just forgot, i am also on a beta blocker (50mg atenolol). but basicly im thinking some sort off heart symdrome now it sounds worse than it actuly is but i would order an urgent tilt table test (prolonged) and also an extended haulter monitor and blood pressure monitor for 48 hours and maybe a stress test these are all tests for the heart when diffrent factors effect its performance, personnaly from my own experence i think these tests will show some very interesting results i also tink sara should introduce more salt into her diet it may actuly help. so basicly my own opinion of her symptoms is a symdrome called POT's (Posdural Orthrastic Tachycardia symdrome) or a from of this symdrome and surprise surprise beta blcokers are one of the many treatments for these symdromes. and may i add i have the above mentioned condition. i hope to hear a reply back soon best of luck and take care. x Hi, John. Thanks so much for your post and for your suggestions. I have read about the tilt table test, and have wondered myself if that might be something to consider. She wore a haulter monitor and it didn't show anything abnormal, but she hasn't worn a BP monitor. Her BP tends to be very low, which she was worried about, but as far as I know low BP is not a problem as long as it is within a certain range and not low enough that she faints....is this correct? The doctor didn't seem to be concerned with it, but it was very low at several exams she has had in the last few months or so. She just got her test results back from the new batch of tests that the internist had done on her and everything came out fine. I find it very strange that she is having so many bad headaches lately. Up until she started with all of this, she rarely ever had a headache in her life. Her sister and I both have migraines, and I can remember times when she would say, I don't know how you deal with having headaches, I guess I'm really lucky I don't get them too. Now she has a headache probably on average maybe 3 or 4 days a week. I try to put all this together with some of the health problems I've had as well as close relatives, as I do believe that a lot of health problems tend to run in families. My youngest daughter was diagnosed with chronic fatigue about 7-8 years ago, and I was diagnosed with fibromyalgia about 6 years ago. I have had wierd symptoms from time to time which seem to point to my heart (shortness of breath, palpitations, etc) but I have had 3 stress tests and they all came out as "inconclusive". They said that they did catch some abnoral results on the chart, but that they couldn't pinpoint what was causing them. My mother has OCD and has been on medication for her heart for about 30 years (congestive heart disease). My grandfather died very suddenly when he was quite young of a massive heart attack. So I guess there is a definate tendency in our family to develop heart problems. I will research Posdural Orthrastic Tachycardia and see what I can find. Thank you for taking the time to post your reply, and thank you for your good wishes for her. I will post again as anything new arises or we find out anything new. Take care, and I hope that you do well yourself.Sharon
    Sharon Kay 8 Replies
    • November 12, 2007
    • 07:07 PM
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  • Hi Sharon,In my case the thyroid was hard to diagnose. It took at least 11 yrs for me. My thyroid test just came back normal again, so I think I am going between hypo and hyper. My thyroid is an autoimmune thyroid problem and maybe they are harder to diagnose, I don't know. Maybe hers is autoimmune too. The weight gain has to be thyroid. Crohn's disease you would lose weight. IBS can occur suddenly. Vitamin D is good for immune problems. How much vitamin D does she take? I think I read 1000 iu is the new standard. What does chronic congestion have to do with the stomach? Never heard that one. Have you done a google search on the sore and swollen tongue? I have no clue what that could be unless it was an allergic reaction. I've done research since my brother died of cancer (10 yrs ago), and the main thing that I learned in all these years is that you have to eat to reduce inflammation which means to eat similar to a diabetic diet. No sugar, no starches. Just protein and vegetables. I also believe in fasting thru juicing. When my stomach got really bad, I did a juice fast and it really helped. I think my missing link was the vitamin D, but only time will tell.Good luck!Susie Hi, Susie. Thanks so much for writing again. I will try to respond to your questions the best that I can. I also posted a pretty long reply to John a few minutes ago, but it's funny how sometimes when I hit submit reply, it shows up immediately on the board, and then other times it takes up to a day :confused: I will mention what you said about vitamin D to my daughter. We both take a standard one-a-day kind of multivitamin, but I'm not sure exactly how much D is in one, so I'll have to check the bottle. I wouldn't be surprised if this was something to do with an autoimmune disorder, as I was telling John in my previous post that I was diagnosed about 6 years back with Fibromyalgia, and my youngest daughter was diagnosed with chronic fatigue about 7-8 years ago. It seems to be somewhat common in our family to develop things which are possibly connected with the immune system, I guess. As for the stomach/sinus connection, according to her allergist, stomach acid can back up into the throat and even up into the sinus cavaties and cause chronic sinus problems. Seems a bit strange to me, but then I'm sure the allergist would know a lot more than I would about this kind of thing :o I have done tons of searches for the tongue and mouth thing, and all I have found so far is a lot of very frustrated people who can't seem to find an answer to what causes it. It seems like she has more problems with her tongue bothering her when she is feeling the tightness and discomfort in her throat, which she says feels like swelling and pressure. The lump in her neck is actually in the back, on the right side of the base of her skull, not in the front of her neck. She also has a kind of slight hump which is at the top of her spine close to where her shoulders meet her neck, which feels to the touch to possibly be a slight curvature of the spine, which is most likely connected to her chronic back and shoulder pain. The doctors have noticed this hump, but really didn't seem to have anything to say about it. She gets some relief from a heating pad and an herb-filled thing that she heats in the microwave and wraps around the back of her neck. I'm very sorry to hear about you losing your brother to cancer, hon. That must have been very difficult for you :( I did mention to my daughter what you said about being careful with her diet, and I will find out how much vitamin D we are taking on a daily basis. Take care of yourself, and thank you again for all your imput and suggestions. I really do appreciate it!Sharon
    Sharon Kay 8 Replies
    • November 12, 2007
    • 07:49 PM
    • 0
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  • Have you checked for heavy metal poisoning? it's everywhere, treated wood, pesticides, etc. They build up over time, checking for this sure won't hurt!
    Anonymous 42789 Replies
    • November 12, 2007
    • 09:19 PM
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  • Enlarged/Swollen Tongue: A swollen tongue can be caused by a number of disorders, including strep infection, Down's syndrome, leukemia, cancer, and hypothyroidism. It can also be a minor side effect due to a hangover or an allergic reaction to food or medication.Susie
    hayley3 11 Replies
    • November 13, 2007
    • 02:53 AM
    • 0
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  • How about heavy metal poisoning? This type of poison are in everything from treated wood to pestisides. It's worth a check.
    Jack3270 1 Replies
    • November 13, 2007
    • 03:43 PM
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  • hey sharon, really sorry to hear of your truble! my names john im a student nurse here in ireland! i can actuly relate to most of your daughters symptoms the fatigue, insomnia, sinus, the back pain, the diahrrea, dizzyness, gassy feeling in the pit of the stomic is how id describe it. and some of the other symptoms which iv just forgot, i am also on a beta blocker (50mg atenolol). but basicly im thinking some sort off heart symdrome now it sounds worse than it actuly is but i would order an urgent tilt table test (prolonged) and also an extended haulter monitor and blood pressure monitor for 48 hours and maybe a stress test these are all tests for the heart when diffrent factors effect its performance, personnaly from my own experence i think these tests will show some very interesting results i also tink sara should introduce more salt into her diet it may actuly help. so basicly my own opinion of her symptoms is a symdrome called POT's (Posdural Orthrastic Tachycardia symdrome) or a from of this symdrome and surprise surprise beta blcokers are one of the many treatments for these symdromes. and may i add i have the above mentioned condition. i hope to hear a reply back soon best of luck and take care. xI had POT, and that's just the tip of the Iceberg...I actually cured my POTS with an Oriental Medicine technique called NAET. I don't take drugs for it- it's gone!Entero viruses travel to the brain and can trigger POTS or Myalgic Encephalomylitis.She needs acupuncture treatment for Liver, Brain, and Pancreas.Please read about NAET/ Bioset. The book "Say Goodbye to Illness" by Devi Nambudripad.IN my opinion, vaccines, antibiotics, and dormant infections did this to her. She might have CFS or Myalgic Encephalomylitis. But this can be cure now with NAET / Bioset.What's behind the syndrome is damage to her nervous system, liver damage, pancreas damage. She is not absorbing her nutrients...NAET shall correct that.Fruity.
    Eatafruit78 960 Replies
    • November 13, 2007
    • 03:55 PM
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  • How about heavy metal poisoning? This type of poison are in everything from treated wood to pestisides. It's worth a check.Those toxins are huge triggers of liver and pancreas damage. Some of those chemicals work as neurotransmitters, which mean they can hurt the body by sending messages to our body- they are synthetic hormones.Multiple Chemical Sensitivity is a big part of Chronic Fatigue...for a reason!Fruity.
    Eatafruit78 960 Replies
    • November 13, 2007
    • 03:58 PM
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  • Hi Sharon,Please please please make sure that your daughter's doctors don't just check her thyroid HORMONES and then say she is okay because they are normal. Mine were totally normal for years and years and years and I walked around with many of your daughters symptoms the whole time not knowing that it really WAS my thyroid!!!!!!! I mean, my TSH, T4, T3 were all normal and happy. And they were checked over and over and over.Finally, after a decade of searching for a diagnosis, my 8th neurologist checked my thyroid ANTIBODIES and they were elevated. Then they did an ultrasound of my thyroid and while I did not have a goiter, it was full of micronodules- a sign it was under autimmune attack. I had a lot of throaty symptoms, but my thyroid was never considered becasue my TSH was fine. I also had a lot of thyroid symptoms too.My diagnosis is called Hashimoto's Encephalopathy and most of us who have it are "euthyroid". It can cause profound fatigue, bad headaches, and a lot of your daughter's symptoms. She may have Grave's disease too or Hashi-toxicosis, given her high pulse rate. You can get HE with Graves but it is more commonly seen in Hashimoto's thyroiditis.HE is treatable with steroids. I got even better after they suppressed my thyroid with Levoxyl. Please make sure you daughter's doctors test her thryoid antibodies even if her TSH is okay. They will be reluctant to do so, but it could give her a diagnosis that is treatable. The two main antibodies to check for are thyroperoxidase and thyroglobulin. She may also need to have her TSH receptor antibodies checked for Graves.Please let us know what happens. Be forewarned that most docors don't know about HE and are trained to test thryoid antibodies ONLY when the TSH comes back abnormal.Good luck
    Anonymous 42789 Replies
    • November 14, 2007
    • 09:14 AM
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  • hi Sharon, so sorry to hear that your daughter is having so many problems. Has she been tested for Helicobacter Pylori aka H-Pylori. When you said she had illness when she was small, she could have still had the infection that stayed in the lining of the stomach. It usually takes about 20 years of festering (which could not show up on ordinary blood work) to come to a full boil. Taking any kind of pain relievers that do not have aspirin in them will only intensify the pain (she probably was taken Tylenol or Advil for the headaches) Usually by the time they have diagnosed the H-Pylori the esphogus is ulcerated. So any swallowing will become difficult. When you lay down the acid reflux starts to churn up and it becomes difficult to breath. You do get a goiter, somewhat like the one you would get with thyroid conditions. Go see a gastroenterologist. start with a GI series, then endoscopic exam. In the endoscopic exam they will get a biopsy and test the lining fluids in the stomach, esophogus. If it is H-pylori, she will have a cocktail of antibiotics to take. But it will kill the bacteria and she will be on the road to recovery. Hope this helps. Good luck, God Bless You Both. Just so you know not all doctors check for H-Pylori because the endoscopic exam is a medical procedure.
    Anonymous 42789 Replies
    • February 5, 2008
    • 00:57 PM
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