[jenno]

My daughter Sarah was diagnosed with RSD 5+ years ago following an ankle sprain. She began to have intense abdominal pain soon after RSD treatment was started; and following routine g.i. tests, she was diagnosed with internal RSD. Along the way, a physical therapist also mentioned that she has fibromyalgia. For the first 5 years of her illness, she had very few tests done because these diagnoses appeared to provide valid explanation for all that ails her. Also, most know that definitive RSD tests are hard to come by.

Recently, a doctor began to suspect that Sarah could have Lyme disease. She has had a “positive” test, although we are aware that this test can be indicative of other illnesses as well. We followed this up with an appointment with a Lyme doctor who diagnosed her with Master’s Disease, a tick-born infection that mirrors Lyme. In addition, the Lyme doctor ran lots of tests that indicate that she has abnormal thyroid and hormone levels. Yet another test revealed that she has hyper coagulation. We were told that this is the case in 95% of this doctor’s Lyme patients, in comparison to 5% of the general population.

While still in the process of investigating how to proceed with this diagnosis, Sarah had a test done that had been scheduled in the months prior to the Lyme suspicions. This test revealed that her celiac artery is not supplying her stomach with blood, resulting in yet another diagnosis, Median Arcuate Ligament Syndrome (MALS). The pain she experiences from this has been described as being similar to a heart attack of the stomach as blood flow is essential in food digestion. What these doctors believe is that Sarah has a ligament that is crimping off this artery, and they are recommending surgery.

Sarah's recent Lyme and MALS diagnoses, along with her RSD and Fibro diagnoses, have resulted in lots of unanswered questions and concerns on how best to proceed. Since RSD can affect blood flow, we realize that we must attempt to clarify if the positive MALS test could actually be caused by Sarah’s RSD.

ONE THING THAT WE HAVE COME TO REALIZE IS THAT IT IS REALLY VERY SCARY HOW WHEN A PERSON IS DIAGNOSED WITH RSD, ALMOST ANYTHING IS TOO EASILY EXPLAINED AWAY AS RSD.

For the past two weeks, Sarah had very extensive testing done, more tests than she has had over the entire course of her illness. Follow up tests looking for chronic infections are still pending, but Sarah has again tested positive for hyper coagulation, often associated with infection. She also has had tests that show nerve damage in her back, as well as lots of ligament damage in her joints (Sarah is very hyper mobile). Of interest, she had thermo graphic testing that shows sympathetic activity in the ankle that resulted in her RSD diagnosis, but strangely she has not had pain in that ankle since 2005. (THE DOCTOR IS RECOMMENDING A NERVE BLOCK TO ADDRESS THE NERVE DAMAGE AND SYMPATHETIC ACTIVITY. WE HAVE VERY LIMITED KNOWLEDGE ABOUT BLOCKS, SO ANY ADVICE IS MOST VALUABLE) Confused and overwhelmed, that we are!

ANY WORDS OF WISDOM FROM THE MEMBERS OF THIS WISE AND EXPERIENCED FORUM WOULD BE VERY HELPFUL AND MUCH APPRECIATED.