[lakens mom]

I have a 16 year old daughter who has been sick for over 6 months. It started out with her feet turning purple no pain, then cramping in calf, then sever lower back pain, headaches, shoulder and arm pain. When sitting or standing over 10 mins her legs and feet become very mottled, She has had so many test and seen so many DR's and no answers yet. She can no longer attend school or do anything that she enjoyed a year ago. Does anyone have any idea of what I can do for her.

[Jomar]

Sometimes for these hard to dx things you might have to go outside the box.
Maybe seek out a highly rated naturopath, acupuncturist, something along those lines?

I assume she has had MRI's and other scans, and those are all normal and all blood-work comes back normal?

Are you in an area that ticks/Lyme might be a factor?

[ginnie]

Welcome to Neuro Talk. I know what being a worried mom is. Have you gone to see neurologists that specialize in RSD? Also their is a field of medicine called a Physiatrist. They try integrative medicine, and think somewhat outside the box. Mine, has pain as her first priority, then she evaluates all the rest. If you visit the RSD CRPS forum, you will hear many of the symptoms that people experience. I am not a professional, but there are some very smart people here on Neuro Talk. Mrs.D, and our moderators may be able to direct you too.
I really hope there is a resolution to your daughters illness. Keep posting, you will get more replies. Has any medication been prescribed for your daughter?
There are hospitals such as Mayo clinic, and most teaching hospitals, that can do a broader range of dx. Someone on this site may have more that may help. I will keep your family in my thoughts and prayers. ginnie

[lakens mom]

Originally Posted by ginnie

Welcome to Neuro Talk. I know what being a worried mom is. Have you gone to see neurologists that specialize in RSD? Also their is a field of medicine called a Physiatrist. They try integrative medicine, and think somewhat outside the box. Mine, has pain as her first priority, then she evaluates all the rest. If you visit the RSD CRPS forum, you will hear many of the symptoms that people experience. I am not a professional, but there are some very smart people here on Neuro Talk. Mrs.D, and our moderators may be able to direct you too.
I really hope there is a resolution to your daughters illness. Keep posting, you will get more replies. Has any medication been prescribed for your daughter?
There are hospitals such as Mayo clinic, and most teaching hospitals, that can do a broader range of dx. Someone on this site may have more that may help. I will keep your family in my thoughts and prayers. ginnie

I have asked several DR's about RSD and they all look at me like I am crazy. and say im sure that isn't it. she has had MRI, MRA , CT of brain, blood test . We have been to the UW of Madison WI, Childrens Hospital in Chicago IL. Im just so lost as to what to do. She is on Neurotin 300mg 2x daily, and Vicodin every 4 hrs for pain. nothing really helps. We are waiting for more blood work that has been sent to the Mayo Clinic. she has to see a Gyno for cyst that where found on ovaries now. also a Cardio specialist to see if she has POTS syndrome. and a spine specialist for a node on her spine, That is what showed up on her last MRI.

[lakens mom]

Originally Posted by Jo*mar

Sometimes for these hard to dx things you might have to go outside the box.
Maybe seek out a highly rated naturopath, acupuncturist, something along those lines?

I assume she has had MRI's and other scans, and those are all normal and all blood-work comes back normal?

Are you in an area that ticks/Lyme might be a factor?

She was tested for Lyme first thing. She has had MRI , MRA, CT of brain, blood work so many test.