it's all in her head???

[Loriann6482]

My 17 yr old Dear Daughter was taking a break after helping to clean her sister's apartment. Suddenly, she had sharp pain in her upper back (thoracic area), in her shoulders and her neck, pain radiated up and over her head (( you all know this feeling, i'm certain )). Next her right side went numb from her face to her foot, her left leg started to move involuntarily in a bicycling motion and she couldn't form words.  Afraid it was a stroke or something, I rushed her to the emergency department.  They did a head CT w/o contrast, a urinalysis for UTI, pregnancy and drugs (all negative), gave her valium and toradol. They then sent her home with a Dx of Low Back Pain (!?!?!?) and an Rx for muscle relaxants. 2 days later, still stuttering and slightly dragging her right foot as she walked across the room, she had a drop attack and her left leg started to pedal again.  Her PCP got her in the next morning, ran a full panel of blood tests, as well as xrays of her cervical and thoracic spine, and set up an appointment with a neurologist. PCP was completely at a loss.
Took her to the appointment with the NL on Monday.  He did the routine neuro exam and proceded to pronounce that she was perfectly healthy, that her MRI (done 3 wks prior), CT, xrays, labs and the exam were all negative for any physiological or neurological disorder of any kind.  He sarcastically stated he would order an EEG if we wanted, but it would be best if she would just start to talk normally, walk normally, and set up an appointment with a psychiatrist because this is all psychosomatic.
I've gone through the whole route of "there's nothing wrong with you, it's all in your head" on my own behalf and continued to muddle through until i was diagnosed and found someone that would take me and my symptoms seriously.  I've never been so angry until now. Now that my DD is suffering and struggling to get each word to come out of her mouth, having to use a walker to avoid falling and hitting her head, being told that it's all in her head.
Well guess what? I believe she has Chiari I. And it really IS all in her head.
Any experience in explaining to a teenager how to deal with the frustration of fighting for a correct diagnosis would be so very much appreciated. Also any ideas on the symptoms she is experiencing and whether you've found them to be related to Chiari would also help. Thanks, Lori

[selmaS]

  I am glad u both will be reviewed for possible assessment at TCI....I think Drs tend to get in our way most of the time be it on purpose or just blind stupidity....ugh.,....so frustrating.Have u checked ne of the other non profits that also fly people to Dr appointments and surgeries? We do have a list of a few of them in the  Health Pages.

Our Monday thread is for rants so if u feel u need to vent or rant more...every Monday...lol....and I feel it is best to let it out as holding it in will only make us feel worse.

[Loriann6482]

Thanks to all who responded! Selma, I agree with the sleep clinic idea you offered. She does snore quite a bit and seems to stop breathing several times during the night.  I wasn't aware that RLS was co-occuring with sleep apnea, however.  I will talk to her primary care doctor about this. Her case will be reviewed by the team @ TCI next monday, 7/8/13, to see if they agree that she is a candidate for their services.  If so, we will both be going to NY this month to be tested and screened.

On another note, I'm a little frustrated in trying to get assistance from Mercy Medical Airlift for the transportation to NY.  Part of their screening process involves sending a form to the primary care Dr. to get verification that we can travel by plane, I was told.  It turns out they also ask the Dr. if she referred us to the doctor on the other end, to be sure this is not something that we could get treatment for locally. My DD's primary answered that NO she did not refer DD to this specialist.  My next move is to talk to the primary herself, because she did think that we should get a second opinion and why does she care if it's in our town or NY (there are NO true Chiari specialists in our town - a point I explained to the Mercy staff person).  

Thanks for letting me vent. love & prayers, days without pain, to everyone,
Lori

[Loriann6482]

Thanks for the reminder! When I order the copies of the films & scans I will also make sure to ask for copies of the reports.

trying to stay positive,
Lori

[bagheesmom]

Do you by chance have copies of the reports from your DDs tests? I was told that my MRI was normal and nothing was wrong. I didn't know I had Chiari until I picked up the report and it was stated on there. Best of luck to you and your daughter. I hope you get answers soon.

[Victoriamaria87]

I personally have not experienced these issues. I have however just been diagnosed 5 yr ago and as of 6 months ago I became symptomatic. I get debilitating migraines, sleep apnea , neuro twitches, forgetfulness, stutter, my left side isn the worst, swollen lymphnodes, oh my gosh the tenitis,and worse of all floaters in my eyesight which affect my driving. Nausea, and upset stomach are the least of my worries when I can't recall a conversation I had previously! I hope ur daughter is ok. It took 3 dr to find out what was wrong. They all thought I was a hypochondriac. I am 25 and I shouldn't have all these "things" wrong with me. News flash, DR. Don't know everything and sometimes they have too much pride to admit not knowing what the actual problem is since "they" don't have the ability to figure out what's wrong. Just remember everyone with chiari is different and it isn't a well known disease.