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What's going on?
Hi,
I was hoping you could give me advice with regards to a series of symptoms that nobody has been able to explain, despite my seeing many doctors and having many tests.
It all started when I was 12 when I woke up randomly with back pain. I'm pretty active, so I wrote it off as overdoing it, and after a few weeks it eventually went away. A few months later, though, my back pain returned and it sort of felt as if my back had given out.
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... I am wary of changing doctors too much because that reeks of Munchhausen, and I don't want to give anyone an excuse not to take my symptoms seriously. What would you recommend that one does when he or she cannot find an explanation for their symptoms? I have trouble believing in idiopathic symptoms, especially in a once completely healthy, active teenager. Plus, I don't think sleeping 12+ hours a day is going to cut it in med school and beyond.
Answer:
What's going on?
:)Hi YankeeBeckham
I can't help but wonder by your post of such vast symptoms and no concrete diagnosis from Dr.'s how are your living habits, do you eat properly? Are you anemic now and often? All of these symptoms since your were 12, now 19 is terriable. I hope you get some answers and keep us posted.
Sincerely,
Purple98Lady
Answer:
What's going on?
Thanks for your response.
My living habits are pretty good, especially better than most my age. I don't and have never smoked or drank alcohol. I clearly get enough, if not too much sleep. Since I've started losing my appetite and then weight, I've made a concerted effort to focus on what I'm eating and eat mostly whole grains, fruits and vegetable. I play and I'm still trying to play soccer, ice hockey, and baseball, so I get enough exercise too. These actvities also provide me with a lot of stress relief, so I feel like my mental health is fine. Except for these symptoms, I'd say I'm extremely healthy. It seems that every other blood test I've had I'm anemic and its probably tied to menstruation. I just don't know where to turn anymore. Every doctor I've seen just seems to want to pass the buck in that if they can't find out what's wrong with me, then its not their problem. And with symptoms that seem to encompass many systems, I don't even know where I should be looking. I just need to find one person who will commit himself to finding what's wrong, instead of refering me to another doctor who will just rule out the same five illnesses and refer me to the next specialist.
Answer:
What's going on?
Hi again.
Well its wonderful you never smoke or drink and your so very active. I wish you could enjoy being and feeling your age as you should. You said you eat whole grains ,fruits and veggies. Do you eat meat or enough dairy products to help with your enemia? And you mentioned it could be tied to your menses. Maybe a visit to your gyn also would be helpful. Your so active maybe you need more protien, iron etc., esp. if you have heavy menses. If your underweight too can make you feel so weak. I certainly hope you get some answers.
Good Luck to you!
Purple98Lady
Answer:
What's going on?
When I read your message it was somewhat like reading about myself. I am 36 years old and I was always very physically active. But my pain problems started after being involved in two motor vehicle accidents. I have almost the same problems that you are experiencing. But, unlike you I had MRIs of my lower back and cervical and they showed disk herniations, therefore my doctor says this is what is causing the pain. I also had an EMG test which shows C-5 radiculopathy. I experienced radiating pain from my back into both my legs (mostly the left) and like you my left legs gets numb and tingling, I have a lot of muscle spasms in my back, neck and legs. I understand fully the way you describe your pain since I go through it myself and I also have a high tolerance for pain. I do not understand though that all the tests you have endured showed nothing. I am going for epidurals soon and I am very scared of having a bad reaction. I hope you can get an answer to your problems and some relief to your pain so you can continue with your life. GOD BLESS!!!!
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What's going on?
I wouldn't be worried about the epidural. I had no problems with the first one, and I think I only had problems with the second one because of my tendancy to pass out. You'll be sore for a few days afterwards, but it'll be worth it if you get some relief. Make sure your doctor uses flouroscopy because you don't want to wind up with a headache. Good luck!
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What's going on?
Hi, thanks everyone for the discussion. Here's my contribution to the topic:
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What's going on?
Thanks for your response. I really appreciate the genorisity of spirit you demonstrate by providing this service.
I saw another orthopedist last week who ruled out stress fractures and spondylolysis by virtue of a negative CT. I find it interesting you mentioned lumbar instability, though, because most of the physical therapists I've worked with have commented that my spine is one of the most unstable they've seen. It is curious to me that that wouldn't show up on any of the films, but I can understand how it could be a pain generator (don't quite know how to fix it, though). Of the list, I know SLE, MS and endocrinologic diseases have been ruled out. Doctors did discover a small pituitary tumor, but I'm assuming that as it has since spontaneously shrunk to 2mm, its not causing problems (I would venture that many healthy individuals would have similar findings on random testing). Am I correct in assuming that sarcoidosis always begins in the lungs? I don't think I have been tested for it for that reason. I have tested negative for Lyme, but I know that testing is controversial with regards to its accuracy, so I will talk to my doctor about looking into that further, especially since I spend so much time outdoors. Is HLA-B27 the one for ankylosing spondylitis? I think my rheumatologist opted not to test for that based on my films and my gender. I think most of my doctors act from the assumption that there is nothing wrong with me, which I find somewhat problematic. I'd be interested to hear your take on fibromyalgia and chronic fatigue syndrome, since there is no underlying cause or tests for them. I find it difficult to believe in processes that are not scientifically substantiated--not that the symptoms aren't real, but to lump them together seems like the mighty medical cop-out. The list of symptoms for fibromyalgia alone is so long and the symptoms are so nonspecific, I think the syndrome quiet conveniently fits most undiagnosed conditions.
The treatments that have been tried so far is much physical therapy, which I've enjoyed to the extent that I'm not one much for sitting still, but it has not helped to alleviate symptoms. I briefly tried chiropractic treatments that I quickly aborted due to an undying love affair I have with mobility and my spinal cord. I am currently taking neurontin, which I don't believe has much effect on my nerve pain, but it does help me sleep. I am also taking florinef and norpace for my syncope, but I doubt its effectiveness as well. I just got off a trial with amitriptyline which I stopped because the medication was making me agitated and increasing my headaches. I did take some prednisone for a nasty sinus infection some time back which helped with many of my symptoms, which leads me to believe my symptoms may be autoimmune or inflammitory in nature. But doctors are wary about giving me steroids after I went pretty addisonian after my epidural. I will look into seeing a psychiatrist, if only to rule that out as a cause of my symptoms. I imagine what would happen is that my attempts to out-shrink the shrink would be found to be rather annoying and unproductive.
Thanks again. Please let me know if I can be of any help with the website because I agree strongly with the mission of the site, and would love to be a part of it.
Answer:
YankeeBeckham
I thought I'd post an update since I'm always encouraging everyone to do the same.
I saw a rheumatologist on Friday, and he seemed very thorough. Turns out I have pleurisy, which I had sort of expected anyway. He drew a lot of blood and said he was testing for things in the "ankylosing spondylitis family, the lupus family, and for vasculitis-type problems." I go back in about a month for the results of the testing. In the meanwhile, he told me to keep taking NSAIDs. Is there anything else I should be doing for the pleurisy? The smoking jokes and the like are getting a little tired at practice. And I'm just going to assume that playing full hockey games with seven skaters is not going to be on the recommended treatment list.
Cheers,
YankeeBeckham