“Hopefully my story can help motivate those that may be struggling to keep pushing for a diagnosis or help someone who may have neurogenic bladder/bowel know that there are other diagnoses outthere besides MS (I heard on more than one occasion that I either had MS or nothing wasreally wrong with me). Having an issue like neurogenic bowel or bladder is frustrating enough without having doctors that either won’t help you because they aren’t interested in your case or dismiss you as delusional or whiny because they can’t solve your problem in fifteen minutes.”
Symptoms
Jenifer fought long and hard for answers. Her initial symptoms were a combination of spastic bladder, urinary retention, and nocturia. Then later her symptoms were; Numbness and tingling down right leg, deep groin pain, and a leg length discrepancy.
Tests
MRI on brain, spine, and thoracic, Lyme disease, B-12 deficiency,
Doctors Suggestions
During her search for answers she was given 90 Bactrim pills, the doctor thought she had a chronic UTI. Other doctors told her they could not help her and good luck.
After two plus years of symptoms and not giving up;
Jenifer started seeing an neurologist and an urologist, finally an orthopedic surgeon ordered an neurogram because her legs were beginning to become asymmetrical. She went back to the neuroigist and she was finally diagnosed with a very rare Arachnoid or Tarlov Cyst that was sitting on the tip of her spinal cord. It was hiding in her sacrum.
Jenifer’s advice to us:
- Always trust your instinct because you know your body best.
- Never let the doctor convince you that you are imagining things, being overly dramatic, or aren’t feeling what you know you are feeling.
- Always get a copy of your records especially your test results and reports.
- Be your #1 advocate, and do your research.
- Always get multiple opinions.
- NEVER GIVE UP!!
Where is she now?
Jenifer is still going through surgeries to remove the cyst and repair her hip.
OH JENIFER PLEASE KEEP US POSTED!! WE ARE PROUD OF YOU!!