Discussions By Condition: I cannot get a diagnosis.

sorry....forgot some of my daughter's important symptoms

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Sharon Kay
  • November 9, 2007
  • 08:46 PM

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 all
feeling of not being able to breath
tightness and feeling of swelling in throat which makes her feel like she is choking
an odd lump which never goes away on the right side of the base of her neck (it is often sore)

Thanks again.

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7 Replies:

  • Well, I did something wrong, and the first post that this was added to did not show up on the board for some reason, so I will copy and paste it here, or the rest of it won't make any sense! :) First post- 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.
    Sharon Kay 8 Replies
    • November 9, 2007
    • 08:56 PM
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  • 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) Thanks again. Here is the orginal post that I tried to add this to....the original post never appeared on the board, even when I tried to add it again, but this one showed up the moment I hit submit?? Please read my original post below- 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.
    Sharon Kay 8 Replies
    • November 9, 2007
    • 09:43 PM
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  • I have nearly all those same symptoms. I thought I was reading about myself there for a minute! Oh, I hope someone knows something about this - I STILL HAVE NO DIAGNOSIS as well.
    Crowchick 1 Replies
    • November 9, 2007
    • 10:26 PM
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  • Feeling of not being able to breathe - hyperthryoidOdd lump at base of throat - thyroid
    hayley3 11 Replies
    • November 9, 2007
    • 11:13 PM
    • 0
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  • try an ent. I had some of the same symptoms and I needed my tonsils out. I never tested positive for a strep test and still had cronic tonsilis. I had sore tounge, swollen :) painful neck lymph nodes especially on left side extreme exhaustion and just felt awful. good luck
    lizmcg 7 Replies
    • November 10, 2007
    • 01:53 AM
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  • I have nearly all those same symptoms. I thought I was reading about myself there for a minute! Oh, I hope someone knows something about this - I STILL HAVE NO DIAGNOSIS as well. Crowchick, I'm very sorry to hear that you are going through the same kind of thing. Seeing this first hand with my daughter, my heart certainly goes out to you. Maybe with time, both of you can find some answers. Hayley posted on my other thread about the same thing and suggested thyroid. Have you been tested for thyroid problems? Also, since I had thyroid problems as a child, does anyone here know whether or not that kind of thing tends to be hereditary in nature? The problem is, now my mom can't recall if mine was too high or too low, but they had me drink radioactive iodine. Thanks to everyone who has posted a response so far. I will post again if I find out anything new at all about her condition. She is having a test in December where they put a camera down her throat to look at her stomach. In the meantime, she is taking Prevacid and she has to eat at least 3 hours before she can go to bed at night, and has to stay away from any kinds of foods that might irritate her stomach at all. Sharon
    Sharon Kay 8 Replies
    • November 10, 2007
    • 03:43 PM
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  • try an ent. I had some of the same symptoms and I needed my tonsils out. I never tested positive for a strep test and still had cronic tonsilis. I had sore tounge, swollen :) painful neck lymph nodes especially on left side extreme exhaustion and just felt awful. good luck Lizmcg, Yes, she has been to an ENT, and unfortunately they couldn't find anything wrong with her tonsils or throat. I hope that having your tonsils removed helped your problems. I had chronic throat infections as a kid, but for some reason the doctors never wanted to take my tonsils out. I'm 50 now, and I still have my tonsils :p Thanks for the good wishes. I will keep updating here as I find out anything new at all. Take care. Sharon
    Sharon Kay 8 Replies
    • November 10, 2007
    • 03:47 PM
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