Discussions By Condition: I cannot get a diagnosis.

"princess and the pea" syndrome

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: susiena
  • October 9, 2008
  • 08:48 AM

I facetiously call my problem "princess and the pea" although I'm hardly a princess. The problem is that about a dozen years ago my migraine headaches became so bad that my career was ruined, I went bankrupt, I became socially isolated, recreational activities were mostly too painful to participate in, and life lost its meaning. After being put on anti-seizure medicine, I was able to get a minimum-wage job. Along the way I gathered other illnesses including interstitial cystitis, idiopathic leg swelling that kept me from walking for a time, vertigo, nausea, dyspepsia, torticollis, restless leg syndrome, dystonia. I used to be a fun-loving, ambitious, hardworking person. Old friends were shocked when they saw this happen to me and I lost many friends because they could not accept the changes in me, which I could not control. I have a doctor who believes that I am really ill, not a head case, and does his best to make me comfortable, yet he admits that he's confused about the overall picture. MRIs, CTs, bloodwork, etc, come out normal. However something is wrong, and I am so frustrated. I'm 40 years old and have a lot of life ahead of me. I don't want to have to live it like this. I do exercise, eat well, drink lots of water, think as positively as I can, try to focus outside myself, focus on spirituality. At times it's very hard. Not knowing what's wrong means there's no path. Any suggestions would be much appreciated.

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5 Replies:

  • There are alot of viruses and infections out there the drs don't test for with regular blood work.The tests are meant to be a guide, symptoms should be included in the dx. Do you know if you were tested for things like bartonella, babesia, mycroplamas, Epstien Barr and others ? Your symptoms sound alot like mine. Check out www.lymenet.org and see if you think it might apply to you. Best Wishes~~JerseyLymie
    Anonymous 42789 Replies
    • October 9, 2008
    • 10:43 AM
    • 0
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  • I wonder if you've been tested for celiac disease. This thread from someone else on another forum may be of interest: http://www.dystonia-bb.org/cgi-bin/perlfect/search/search.pl?q=oromandibular&showurl=%2Fforumarchives%2Fasd%2F48957.html FYI, 5% of people that *have* celiac test negative for it. Here's info: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
    aquila 1263 Replies
    • October 9, 2008
    • 00:25 PM
    • 0
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  • I facetiously call my problem "princess and the pea" although I'm hardly a princess. The problem is that about a dozen years ago my migraine headaches became so bad that my career was ruined, I went bankrupt, I became socially isolated, recreational activities were mostly too painful to participate in, and life lost its meaning. After being put on anti-seizure medicine, I was able to get a minimum-wage job. Along the way I gathered other illnesses including interstitial cystitis, idiopathic leg swelling that kept me from walking for a time, vertigo, nausea, dyspepsia, torticollis, restless leg syndrome, dystonia. I used to be a fun-loving, ambitious, hardworking person. Old friends were shocked when they saw this happen to me and I lost many friends because they could not accept the changes in me, which I could not control. I have a doctor who believes that I am really ill, not a head case, and does his best to make me comfortable, yet he admits that he's confused about the overall picture. MRIs, CTs, bloodwork, etc, come out normal. However something is wrong, and I am so frustrated. I'm 40 years old and have a lot of life ahead of me. I don't want to have to live it like this. I do exercise, eat well, drink lots of water, think as positively as I can, try to focus outside myself, focus on spirituality. At times it's very hard. Not knowing what's wrong means there's no path. Any suggestions would be much appreciated. Thank you for your response, aqulia. I have never heard of celiac disease but I will look into it. I am really at my wit's end and am also glad that you have a referance for dystonia. By the way, if you dont mind, what is "terrible" about my message so that I can perhaps edit it and get more replies? Thanks, susiena.:)
    susiena 1 Replies
    • October 9, 2008
    • 01:29 PM
    • 0
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  • Nothing's terrible about your post, friend. No worries! Many medical pros (and lots of amateurs) respond, but they're busy people & you have to give it a few days, sometimes several weeks for your thread to get really good responses. A lot of people on this forum expect *immediate* answers-- they think there's some genie that sits just waiting for their question! :D Sadly, they get frustrated too early and lose out on good info. Be careful of what you read here. Bring your ideas to your doctor & let him/her decide which ones are worth considering. Best wishes!
    aquila 1263 Replies
    • October 9, 2008
    • 07:14 PM
    • 0
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  • Dear Princess, I am sorry this is so late in answering your post. I hope you are following this thread still. Your symptoms sound a lot like Lyme Disease and/or other tick borne diseases. It is very difficult to get a diagnosis for Lyme unless you have either a LLMD Lyme Literate Medical Doctor, or have your doctor use the specialty lab IgeneX. It isn't the first course of action one would take, but after years with no answers and many tests which say "normal"... it is time to move forward. It's so difficult to continue searching when you are feeling so ill. So my suggestion is to join a Lyme Forum where you can ask questions and get nearly LIVE answers. This kind of communication can help push you forward in your search. Whether or now you have Lyme or tick borne infections will come out with more testing, but either way, the Lyme group will help you on this journey to find answers. I am sorry that you have lost so much of your old life. It is a similar story for most of us. Slowly but surely we went from very intelligent and vital beings to a bunch of symptoms which have robbed us of our once busy and fulfilling lives. You are only 40 so you have LOTS of time to begin this road to health. You just need better guides. And if you have Lyme you will see it and if you don't you will continue searching with MANY more answers to help you go on. I would almost take a bet you have Lyme. So my idea for you is to go online and research different Lyme Disease sites and see if the information you find rings a bell for you. If it does, you can then look into it futher. It sounds as though the doctor you are seeing might just allow you to take some Lyme tests with the specialty lab. IgeneX will send you the kit for free and then your local lab draws blood and then they send it on to IgeneX. It will cost some money to do this. But it is a valuable source of information. I hope this is helpful. Do the research first, then move forward with a better base of strength and belief in yourself! We get pretty beat down with no answers and so many devastating losses. But there is magic in finding answers and sharing your story and finding support. Good Luck. If you want to email me privately, let me know, I will be happy to help you research.
    Anonymous 42789 Replies
    • October 10, 2008
    • 03:12 PM
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