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Old 08-09-2007, 08:39 PM   #1
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Strange leg sensations

Hello and here goes....

I have a healthy 13 year old daughter. About one and half years ago she started complaining about lower to mid back pain. We took her to her pediatrician who sent us to a back specialist who sent us to physical therapy. Nothing. Back to the pediatrician who sent us back to the back doctor who then sent us for an MRI of the total spine as well as a bone scan. Nothing. Back to physical therapy. They suggested that she had some type of twisting in her back. Or perhaps her backpack was too heavy or perhaps she grew so fast that her back muscles just needed to catch up and were causing all kinds of pain. Fast forward about one year. Still back pains but not as bad. Now she complains of really strange and awful sensations in her legs. They are not numb or tingling. She only describes it as a heavy sensation. One day it was so bad that I took her to the ER. On our way there she started experiencing the same strange sensation in her face on the left side around her mouth. She kept asking me is her mouth was droopy (it was not). The ER doc had no idea what was going on. Back to the pediatrician we went. She decided that this was all anxiety induced and that her mouth symptoms were a result of possible hyperventilation. She was not hyperventilating on our way to the ER. This I know. The pediatrician suggested the chiropractor who would not touch her until she was seen by someone who would help her work on her core strength thinking that this was simply an issue of poor core muscles. She went through a series of classes and then was seen by the chiropractor who was unable to help with the problem. The the strange sensations began in the left arm as well as both legs and the left side of her mouth. The neurologist ran a HUGE battery of blood tests (all normal), a brain MRI as well as an EEG. All normal. Back to the pediatrician who still insisted that this is anxiety. she sent us to a therapist who managed to only discuss her possible causes of this "anxiety." That lasted 4 sessions. Now she is still screaming in "pain" from these sensations that keep her awake. I had suggested to the pediatrician possible restless leg syndrome. She told me that my duaghter is too young. I don't know about that but she really does not have many classic symptoms of RLS. Thank goodness all of the tests are normal but I am completely baffled by all of this. After tonights episode I suggested that she not eat chocolate as that may be causing this. Who knows, really. I know that when I eat chocolate I get weird sensations in my leg like RLS. Oh, I was just reminded that she also went to the podiatrist for a strss fracture in her foot. He noticed that her walk was off and put her in orthotics. Still the sensations persisted and she was advised by the pediatrician to stop the orthotics for a while. Nothing.
That is our story. Can ANYONE help us?

Beth

 
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Old 08-10-2007, 07:02 AM   #2
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Re: Strange leg sensations

wow,sounds kind of like me way back when.i have to ask you if YOU saw the actual MRI reports?did you read thru them with the doc?has an actual neuroSURGEON seen her hard films,not just a neurologist?there are alot of things about MRIs that we are never really told about from many different types of(mostly)specialists,who seem to think it is perfectly okay to withold important info only becasue 'they" feel it is not pertinent.believe me,this happens alot more than it should.also,if a particular doc does not have alot of experience in certain areas of expertise,they wont even see a possible problem either.and as for the interpretting radiologist who actually creates that initial report,anything that is actually in any given report is limited to only that particular rads overall knowledge and experience.you see what i mean?no MRI can pick up everything that is actually going on within anyones body,it cannot do that.there can be reasons for your daughters symptoms that just didn't get picked up on the films.no scan is a perfect mirror image of anything,it is not possible.

was there anything at all unusual in her MRI?anything up in that c spine area?if you do not have your own copies of all her testing results from every single test and also all of her medical records from every single doc or therepist that has seen her or layed hands on her,you need to start gathering all this info from the places she has been to and keep all of that stuff in a nice expanding folder that you can take with you to all appts and any possible ER visit that could come up.i had to do this with my son and also myself when things started hitting the fan for me.its just very very handy to have all of her medical records right in hand in any situation,really.

once you obtain all of this info,start going thru things to see what her docs all are thinking and read thru every single test result for any odd things that stick out for you and question them.'something' is causeing these reoccurring symptoms in your child and it needs to be identified and possibly treated if thats the case.i really seriously doubt that this is actual anxiety.honestly,every doc who doesn't have a flippin clue as to what is actually causing someones symptoms seems to like to just dump it into the anxiety catagory,that way they can blow off the patient with a Dx.don't settle for that.if you truely believe that something is wrong with your daughter,keep pushing things til someone finally listens.you know your child better than anyone and if you don't feel things are right,you DO have a right to obtain answers.i had to keep pushing things with my son and myself only to find out what in the hell was going on with both of us at different times for different reasons.do not let any doc ever intimidate you into keeping quiet when you know that your daughter is depending on you to be her voice and get her the help she needs.any actual doc or specialist is only human and they do not know everything.that is where the other opionons come in.no one doc knows everything ya know?i would start obtaining all results and records now.it can all be done over the phone and sent in the mail.i have to keep doing this like every six months or so with the many docs i have to see and my son too.it DOES help,alot.you will be glad you have all this stuff in one place.once you have all of her records and results,let me know what her MRIs actually state about her spine,K?her symptoms DO sound very much neuro related to me(nerve related?)personally,i don't think there realistically is any real limit on age with RLS either(believe me, anything is indeed possible when it comes to the human body).people DO feel symptoms during the day too,they just seem to get worse at night when you lie down and that energy in them is not being dissipated like it is during the day.just an FYI.good luck and please keep me posted,K? FB
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11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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