Discussions By Condition: Medical Errors

Undiagnosed for 14 years and counting

Posted In: Medical Errors 9 Replies
  • Posted By: Byrdberes
  • October 17, 2007
  • 04:33 AM

Female 41 years old. !4 years ago had normal labor and delivery of second son and within a week was very ill. Had Infectious Diesease Doctors come in, Rhumetoid specialists, OBGYNs, dermatologists, internal medicine docs etc.

Symptoms occur once every 2-3 months but not always:
Feels like I have a RAGING fever but do not. Severe joint pain without swelling, pain can travel from one joint to another in one day. One day a knee, the next a toe. Only on extremities. Have erathema nodosum on legs with these 'outbreaks'. EXTREMELY cold, have to take scalding showers just to stop shaking. Had ONE positive ANA, during outbreak have very high SED rate of at the worst 165. During outbreaks fatique, muscle weakness...basically it feels like a HORRIBLE flu but without the vomiting etc and with severe joint pain. Some days pain in joints is so bad I can not close hands or walk. It has gotten so bad I have considered suicide. Been to Loma Linda Medical Center for about every test known to man and have no diagnosis yet. I watch Mystery Diagnosis religiously in hopes SOMEONE will have the same symtoms so I can finally figure out what is wrong with me. PLEASE HELP if anyone has any ideas

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  • Hi, being undiagnosed is a BIG burden to have to carry around on one's shoulders and especially for that many years. Only because there is too much emphasis placed on being undiagnosed, but actually what it really boils down to is a 'process of elimination'. Which in your case has proved to be very positive in that you have been for umpteen tests and all have been cleared. Take some time out for yourself - relook at all the tests you have had done - if they rule out the main life-threatening diseases such as, blood & bone cancers, tumours anywhere in the body and nervous disorders (any disease that puts a time limit on how many days you have left to live), then I would sit back and try not to dwell on what you think might be wrong with you, but be thankful for the illnesses that you don't have and strive to live strong for your family. You are at the prime of your life. At 41yr - your body and mind are still strong enough to heal whatever it is that is troubling you. God Bless & Take Care
    Anonymous 42789 Replies
    • October 18, 2007
    • 08:28 AM
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  • Please have them check for kidney or gall stones. I am no doctor and hopefully they have checked this, but figured it could not hurt to put in my 2 cents.
    Anonymous 42789 Replies
    • October 18, 2007
    • 01:52 PM
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  • Female 41 years old. !4 years ago had normal labor and delivery of second son and within a week was very ill. Had Infectious Diesease Doctors come in, Rhumetoid specialists, OBGYNs, dermatologists, internal medicine docs etc.Symptoms occur once every 2-3 months but not always:Feels like I have a RAGING fever but do not. Severe joint pain without swelling, pain can travel from one joint to another in one day. One day a knee, the next a toe. Only on extremities. Have erathema nodosum on legs with these 'outbreaks'. EXTREMELY cold, have to take scalding showers just to stop shaking. Had ONE positive ANA, during outbreak have very high SED rate of at the worst 165. During outbreaks fatique, muscle weakness...basically it feels like a HORRIBLE flu but without the vomiting etc and with severe joint pain. Some days pain in joints is so bad I can not close hands or walk. It has gotten so bad I have considered suicide. Been to Loma Linda Medical Center for about every test known to man and have no diagnosis yet. I watch Mystery Diagnosis religiously in hopes SOMEONE will have the same symtoms so I can finally figure out what is wrong with me. PLEASE HELP if anyone has any ideasJust by going on the history of migratory arthritis, I'd have to know a few things. Did you ever have any of the usual STD tests like gonorrhea and syphilis? Did you ever have serology for Lyme disease? Do you have a history of travel outside of the country. which may have led to an unusual infection. Could you have TB?Next: The autoimmune slant... this positive ANA, was it followed up and repeated? Did they do any of the other tests for lupus such as DSDNA etc.. Has myositis been investigated? Has anybody suggested sarcoid or Gout? Are there any medications which may cause this? Are your kidneys okay? Could you have a heavy metal poisoning? I'm sure all of these were done.Of course, the most critical in my mind right now is your psychologic well being. If you are depressed and considered suicide, you ought to see a psychiatrist for that.
    Anonymous 42789 Replies
    • October 18, 2007
    • 06:58 PM
    • 0
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  • Thanks for everyones advice! I am thankful I have my faith and great family support! I did live overseas for several years, including Pakistan, India, Sri Lanka, Thailand to name a few (all when I was younger). When I originally became ill I saw an Infectious Disease specialist who researched all the diseases active in all the countries I had been in and still we found nothing. There was one point where my Internal Medicine doctor did run tests for Lyme and Rocky Mountain fever..again nothing. I never have any sort of rash either on scalp, body or face and I am outside in the sun most of the time whole my outbreaks are every three to five months. I am TB tested yearly as I work with a school district, and I was, years ago tested for a variety of STD's. I can ask that they be run again. I can also mention metal poisioning to my doctor. I was at her office yesterday and my SED rate yesterday, after being on prednisone for 1 week was still 102. SO she is going to have me go to Scripps Medical Center at the next outbreak. I am greatful to all of you for your thoughts! PLEASE don't give up on me!
    Byrdberes 3 Replies
    • October 18, 2007
    • 11:57 PM
    • 0
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  • I wish I had a medical answer to share with you. It sounds like you are really fighting for your life, and I am sure that your family and friends are very proud of you, I can read so much courage in your post. As for the physical pain, I've found a few things that work for me a good percentage of the time. Try The Wild Divine or another home-computer biofeedback machine. I bought the Wild Divine "game" to try to alleviate my symptoms and found that I am able to really feel a bit more control when I am flaring up. The slow breathing rate exercises helped me most, you may find that the elevated temperature or heart rate exercises help you more. The main thing for me was that I could imagine myself at my machine and actually slow down the pain! Every little victory helps me feel a bit better about the future. Try moist heating pads - the heat from these penetrates for me much better than an old electric pad ever did - and feels like the bath or water bottle when I have to be up and around. I'm sure you already use a capsacin ointment, but it bears repeating just in case. Capsaicin has been my "in case of emergency, rub this on" treatment. When it feels like I have no options I can use this stuff to get me to the next hour or the next morning. Which reminds me: try setting teeny goals - I can make it until lunch. I can get to the fridge and then I will have a break, I can have a nap if I wash this floor, this is important to the kids or the dog or this is important to me and I can do this! Internal cheerleading can give me strength I did not realize that I had, it surprises me how well it works. When these strategies do not alleviate your suffering enough to get done what you think you need to do, try giving your self three hours. Three little hours. Three hours gives my body rest, it gives me permission to stop for a nice chunk of time, but it is not that much out of one day. Three hours. Often when I find myself in the three hour timeout box more than I would like I realize that I have added things to the must have list that should be on my wish list or nice to have list. My family wants me, not my cake or a spotless bathroom or a fancy new sports outfit, they want time with me when I am not twisted in pain. I bet your family is the same. And finally, make a giggle book. Find an old photo album or scrapbook and put into it all the thinking of you cards, the thank you notes, the happy photos that remind you of a wonderful day, locks of hair from a beloved family member, you get the idea. The purpose is for days like you are having, days like I am having today. I take out my book and I have PROOF that I am a valuable, loving and cherished person. It is there and undeniable. At this point the guys know that I forget to add things to the book myself, so they add things to the back as they happen, so that I will remember when it is hard to find perspective that I am not useless and that I do make a difference and there are many ways that the world is a better place because of me. Right now you are at a low point and I can hear the pain and frustration. Try to hang on until you begin to feel differently about the future. My prayers and thoughts are with you,Jean
    jharsen 9 Replies
    • October 19, 2007
    • 01:14 PM
    • 0
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  • I wish I had a medical answer to share with you. It sounds like you are really fighting for your life, and I am sure that your family and friends are very proud of you, I can read so much courage in your post. As for the physical pain, I've found a few things that work for me a good percentage of the time. Try The Wild Divine or another home-computer biofeedback machine. I bought the Wild Divine "game" to try to alleviate my symptoms and found that in addition to distracting me I am able to really feel a bit more control when I am flaring up. The slow breathing rate exercises helped me most, you may find that the elevated temperature or heart rate exercises help you more. The main thing for me was that I could imagine myself at my machine and actually slow down the pain! Every little victory helps me feel a bit better about the future. Try moist heating pads - the heat from these penetrates for me much better than an old electric pad ever did - and feels like the bath or water bottle when I have to be up and around. I'm sure you already use a capsacin ointment, but it bears repeating just in case. Capsaicin has been my "in case of emergency, rub this on" treatment. When it feels like I have no options I can use this stuff to get me to the next hour or the next morning. Which reminds me: try setting teeny goals - I can make it until lunch. I can get to the fridge and then I will have a break. I can have a nap if I wash this floor. This is important to the kids or to the dog or this is important to me and I can do this! Internal cheerleading can give me strength I did not realize that I had, it surprises me how well it works. When these strategies do not alleviate your suffering enough to get done what you think you need to do, try giving your self three hours. Three little hours. Three hours gives my body rest, it gives me permission to stop for a nice chunk of time, but it is not that much out of one day. Three hours. Often when I find myself in the three hour timeout box more than I would like I realize that I have added things to the must have list that should be on my wish list or my nice to have list. My family wants me, not my cookies or a spotless bathroom or a fancy new sports outfit, they want time with me when I am not twisted in pain. I bet your family is the same. And finally, make a giggle book. Find an old photo album or scrapbook and put into it all the thinking of you cards, the thank you notes, the happy photos that remind you of a wonderful day, locks of hair from a beloved family member, you get the idea. The purpose is for days like you are having, days like I am having today. I take out my book and I have PROOF that I am a valuable, loving and cherished person. It is there and undeniable. At this point the guys know that I forget to add things to the book myself, so they add things to the back as they happen, so that I will remember when it is hard to find perspective that I am not useless and that I do make a difference and there are many ways that the world is a better place because of me. Right now you are at a low point and I can hear the pain and frustration. Try to hang on until you begin to feel differently about the future. My prayers and thoughts are with you,Jean
    jharsen 9 Replies
    • October 19, 2007
    • 01:17 PM
    • 0
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  • Sounds like you have something autoimmune going on. Unfortunatly, most autoimmune diseases take years to diagnose. You need to keep testing and retesting. In the meantime I hope you can talk to your doctor and let him know how horrible these symptoms are and let him know that you need something to take the pain away as well as someone to talk to. Family can be of great help, but in the long run having an outsider to talk to is the best medicine you can get. Hang on tight and let us know how things work out...
    Anonymous 42789 Replies
    • October 19, 2007
    • 07:48 PM
    • 0
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  • Symptoms occur once every 2-3 months but not always:Feels like I have a RAGING fever but do not. Severe joint pain without swelling, pain can travel from one joint to another in one day. One day a knee, the next a toe. Only on extremities. erathema nodosum on legs with these 'outbreaks'. EXTREMELY cold, have to take scalding showers just to stop shaking. ONE positive ANA, during outbreak very high SED rate of at the worst 165. During outbreaks fatique, muscle weakness...basically it feels like a HORRIBLE flu Some days pain in joints is so bad I can not close hands or walk.Erythema nodosum, the hallmark of acute sarcoidosis, is commonly seen in European, Puerto Rican, and Mexican patients, particularly in women of childbearing age. So sarcoidosis?http://ajrccm.atsjournals.org/cgi/content/full/160/2/736_____________Were you tested for Valley Fever?_____________Have you been tested for:POLYMYOSITIS AND DERMATOMYOSITIShttp://www.emedicine.com/neuro/topic85.htm_____________You could easily explore more diseases and conditions by doing a search in google or yahoo or ? using the following words:severe joint pain, -swelling, -vomiting, muscle weakness, erythema nodosum, fatigueIf you don't want a symptom included in your research use the " - " directly in front of the word with no space.Doing my own research is how I discovered what I had wrong with me. It took a couple of months to put it all together.
    Anonymous 42789 Replies
    • October 19, 2007
    • 10:21 PM
    • 0
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  • I think you have something called PMR or polymyalgia rheumatica. It usually requires steroids to combat the effects. Most people get better after a few years of treatment, but occasionally it comes back later in life. I'm not a health professional, but my mother had this disease and your symptoms are identical. One day she woke up and couldn't turn on the water, open or close her hands, etc. The doctors misdiagnosed her initially but she finally saw a doctor who had seen a case of PMR before and the extremely high SED rate was what led him to the correct diagnosis. She got better with treatment, unfortunately she got it again about 15 years later (but a much milder case).
    Anonymous 42789 Replies
    • October 11, 2008
    • 09:52 AM
    • 0
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