Discussions By Condition: I cannot get a diagnosis.

Leg pain, numbness, muscle weakness in legs.

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: jenaren
  • January 18, 2007
  • 03:58 AM

My 11 year old daughter woke up in the middle of the night a week ago with severe pain in both her legs that lasted for 2-3 minutes. Then they went completely numb for about a half an hour, and when the feeling came back, the pain was still there but a little duller, and her muscles were useless. She could stand with support, but her toes turned inward and she could not make her foot go flat on the floor, she stayed on her tip-toes. Her legs shake and she looks kind of twisted. We went to the ER, and they transferred her to a children's hospital. She was seen by several neurologists and a rheumatologist. She had blood tests, an eeg, an ekg, an ecg, an mri and x-rays of her spine. She had a chest x-ray and peak-flow (respiratory) measurements every six hours. We stayed in the hospital for four days, but nobody can come to a conclusion of what is wrong with her. She had two abnormal blood tests: an elevated non-specific sedimentation rate, and an elevated streptocillin. They sent us home with no answers, and she still can't walk. She hasn't been able to go to school for a week, and she is scooting around our house on an office chair with wheels until I can get her a wheelchair. Her arms have now started shaking and losing their strength as well, and she is pale and sleeps all the time. I'm afraid that this is getting worse and could really do long-term damage, and we're not doing anything to stop it. If anyone has any insight, I would appreciate it so much.

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  • I have no idea what could be wrong with your daughter, BUT I do want to suggest that you start exercising the legs immediately - even before you get to a physical therapist - and start doing leg lifts. Muscles waste amazingly quickly. After my 13 yr old daughter had sprains in both legs (caused by collapsing on weak legs due to intestinal damage, amazingly enough) she was reluctant to stand on either because both hurt. I respected this for a few weeks figuring she needed to heal. Well, she spiraled down quickly and what began as painful, became excruciatingly painful and impossible. What might have been a 2 week recovery period, became a 7 month ordeal in physical therapy where she had to graduate from wheelchair, to walker to crutches and needed vicodin to get through. I know you're really concentrating on getting a diagnosis (I know I was - it eventually took 4 months to get), don't let her legs languish - whatever she can do have her do it repeatedly, until she can do more. Good luck.
    Anonymous 42,789 Replies
    • January 18, 2007
    • 04:28 AM
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  • This sounds similar to a girl I saw on a Discovery Health show called "Medical Mysteries" where she got severe muscle cramping with pain, and her feet curled up and eventually her hands did too. It made it hard for her to do anything with her hands. She went undiagnosed for years, but then eventually found out she had Lyme disease. The problem with Lyme is you have to be persistand with testing, as a majority of the time, you'll get a negative result, even if you have Lyme. I'm not sure which test is better, but I'd do research and have her tested multiple times to rule it out. If it is Lyme disease, the sooner she's treated the better. It can take months to show any improvement, but she can get better if it's caught and treated right. Best of luck!!--Sarah
    deadlysauce 67 Replies
    • January 18, 2007
    • 04:33 AM
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  • Many hospitals also have heated therapy pools - try to get her into one of these if you can. My daughter's ankle also shook - the docs called it a myoclonic tremor. Exercise and use was the only thing that worked to dissolve it.ANOTHER THING. Get her a really high quality natural multi-vitamin, like those sold at Whole Foods or michaelshealth.com, along with a highly absorbable calcium with D and magnesium (one that has digestive enzymes). These were the keys to my daughter's recovery. And, get a genetics consult - many of the genetic causes are treatable.
    Anonymous 42,789 Replies
    • January 18, 2007
    • 04:38 AM
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  • Another possibility is HS Purpura. If your daughter develops bruises, burst cappilaries, or swollen leg joints/spine, that's probably what it is. HS Purpura has many symptoms similar to Juvenile rheumatoid arthritis, but sometimes the tell-tale symptoms (those I mentioned before) don't show up immediately.I had this when I was a kid, and went to a whole slew of different doctors before I developed petikia and they told my mum it was HS Purpura.
    Anonymous 42,789 Replies
    • January 18, 2007
    • 11:01 AM
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  • An update: my daughter is in the hospital again, can't even stand up now. She has had a spinal tap and some more blood work, and she gets physical therapy every day. She just sleeps. Her neurologist is stumped, can't find any reason for her symptoms, and even had a psychiatrist see her. The psych did not feel that seeing her again was necessary. She has a second opinion with another neurologist tomorrow, and will probably have an electromyogram. I am going to suggest genetic testing too. Thanks everyone for your replies, and any more would be welcome.
    jenaren 1 Replies
    • January 25, 2007
    • 04:39 AM
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  • Thank you for updating. Since she is in the hospital get as many consults as you can - infectious disease (to check for lyme, ehrlichia and anything he/she can think of), pain management (to evaluate any pain issues she may have - does she have any? ifso, where is it?), GI guy to check for celiac disease (altho my daughter tested negative for this and had a clear colonoscopy & endoscopy, the ab CT scan that *I* insisted on did find intestinal damage in the jejeunum - a later video pill proved there were erosions tho no frank celiac damage - she had NO gastro symptoms except an intolerance for doughnuts - yet it is believed now that these erosions caused a malabsorption problem that did not show up on blood tests. It seems to be known only in the Celiac world that intestinal damage can manifest in neurologial problems. The eventual treatment was nexium along with Teen Girl vitamins made by Michael's Health along with the highly absorbable calcium and D. Is your daughter underweight or have short stature?) - If she is underweight/short stature, get an endocrinologist consult tooThe psych consult really gets me - they did that to us, and were going to release us with a psych diagnosis - the Ab CT came back later that day. Why were they going with the psych diagnosis? Becoz she was depressed and had anxiety - well, YEAH, overnight she goes from healthy kid to kid who sleeps all the time and is in a wheelchair!Get a rheumatologist consult - this has autoimmune/connective tissue disease possibilties - lupus, etc - Get an orthopedic consult - they need to do a bone scan Do NOT let them release you until you get an answer. If you had to see all these specialists outpatient, it would take you months of waiting for an appt and then waiting for tests - no to mention havin to transport your daughter all over in a wheelchair, while she's deteriorating. In the hospital, they all come to you.
    Anonymous 42,789 Replies
    • January 25, 2007
    • 07:41 AM
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