Looking for answers,
 

My name is Julie , My 16 year old daughter Laken has always been healthy until this last 6 months. Laken was on top of a pyramid in cheer and she fell . she landed on her tailbone. After a trip to the ER we were told it was just badly bruised. After a few weeks she was back to normal and back to cheer. She told me that she noticed when she took her shoes off after practice and PE class her feet where purple but no pain. I called our primary and he said just keep a eye on it. after 2 months of this happening she started being woke in the night to very bad muscle cramps in her calf. one night it would not go away. after a trip to our DR he said we needed to run some test now that she is in pain. she had a MRI, MRA, CT of Head. so many blood test. where sent to many specialist as her pain kept spreading. after 6 months of DR's and test we still don't have any answers. We were told it could be a autoimmune disorder . I have researched so many and keep coming back to CRPS. We are now waiting on more blood work and 3 more specialist. but while we wait my daughter gets worse. her symptoms are now
Sever lower back pain, no feeling in toes , feet are ice cold most the time, feet and lower half of legs become mottled and deep purple while standing or sitting over 10 mins. tingling in back of head followed by bad headache ,shoulder pain, ankle pain, heart palpations, if legs get cold they hurt to the touch. nausea, She walks so slow and is in constant pain. No longer can attend school or do anything a 16 year should be able to do. I sure hope someone can give us an idea of what they think, Im so afraid of loosing my daughter and the DR's just cant find out what this is...

I'm pretty new to the diagnosis of my autoimmune so I won't be of much diagnostic help. I saw your post didn't have a response yet, and I had hoped someone with more of a knowledge base would come offer you some suggestions to look into.

Until you get some direction or answers I just wanted to say you are not alone in your worries and frustrations. I was undiagnosed for 7 years, as auto-immune is notoriously difficult to diagnose. I know that's not really helping... I'm sorry. I can tell you when my hands stopped working, it scared me something aweful. I bipassed my primary care as I don't require a referral with my insurance and scheduled with a neurologist. It was 3 weeks before I could even get the initial consultation, and then another month before she scheduled further testing. Then, I was referred out to a Rhumatologist, and the one at the university where my neurologist is was going to take 9 months for an appointment. Unacceptable! I called around and found a rhumatologist that got me in within a week.
So, if the docs are making you wait, call around. Get recommendations from others you personally know if possible. If you don't have to have a referral via insurance, and it is suspected autoimmune please find a rhuematologist asap. Scheduling an initial appointment before the testing comes back may save you some of the waiting time. If they figure it out in the meantime and you don't need a Rhuematologist, you can always call back and cancel. (I know you mentioned specialists, but not which ones.)
I hope your daughter gets the right information and help soon, and a relief from worrying for you! At least if you know what you'ree fighting, you can have a plan. When there is no diagnosis, there is no set treatment plan and that is frustrating.
Oh, and the only other advice I can offer, that helped get me diagnosed. Get copies of all her doctor visits, and bloodwork, scans, ect and keep them with you and take them into ever doc & specialist appointment. An old bloodwork panel helped show the neurologist a particular test had increased exponentially within the last 2 years, that she didn't think much of without comparing the old and the new. I now ask for copies of everything before I leave the office to make sure I put it in my folder. Also, have her start recording everything in a journal/diary/smart phone app. What her symptoms are, how frequently symptoms occur, time of day, activity that brought on symptom, anything that relieves symptom, ect... Even if they're the same every day. You may find a pattern of time of day, for example, my hands hurt more when it rains, so I have more issues then.

Again, good luck to both of you!

I am so sorry that your sweet daughter is in so much pain without a clear diagnosis. I am curious if they ever offered her steroids to get the inflammation under control. And I tried to do a search of best doctors in Illinois for this, but was not successful at finding anything to share with you.

I hope someone can diagnose and come up with a treatment plan soon. Love and prayers to you and your daughter. :hug:

I want to ask if you don't mind, did you notice anything like this prior to her injury? I suppose I thought autoimmune disorders would show their ugly faces regardless. I have been misdiagnosed for years and now it's 2013 and a new neurologist for me. I took a million blood tests it seems and finally I have answers.

I hope you find out what is going on with her soon. Hugs to her (and mom) :grouphug: