NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Anyone have this finding on mri? Circumaortic left renal vein? › Reply To: Anyone have this finding on mri? Circumaortic left renal vein?
Hi DR. Diane, thank you for replying to my post. Wow, I was so floored when i read you’re post, and you’re ref to nutcracker syndrome. I have been sick for so many yrs, to many dx to count. Married to a family practice DR, who has tried his best to help me through this journey. One of the DX’s that i gave myself, a couple of yrs ago, was NCS syndrome. I consulted with a vascular surgeon, who was very impressed with my explanation and knowledge of the syndrome, and why i thought i might have it. He didn’t appear to know much about it, but agreed to order a CT to rule it out. Test came back normal, so i canceled follow up appt and let it go at that, as i thought he would look at the radiologist’s report and boot me out of his office. I just found it interesting, as i do with many of you’re findings, that you mentioned NCS. I’ve had many DX’s over the yrs; Chiari-surgery-2002, csf leak, lyme, autonomic, narcolepsey, mastioditis- surgery-1992, and more. I’m sure you get the picture, a patient desperate to be well and thinking “I should be earning a medical degree with all i have researched and learned about medicine throughout the yrs”. That being said, I have to say, that i truly believe that the information that you have provided has made the most sense, regarding my symptoms. I’ve read you’re most resent book with great interest. I’ve had pain in the juglar veins in my neck for yrs, which know DR has tested or even mention could be contributing to my failing health. I want to try you’re protocol, but am reluctant, cuz my hubby thinks i have a csf leak, as per readings from an ICP monitor, which was mostly in negative numbers during the duration of 5 days and thinks diamox might make symptoms worse. I know you’re very busy, but when you have time, i would love to hear you’re thoughts on negative ICP readings, and if you think that would R/O hydro and CCVIS? Also, have you encountered any patients who have been treated for NCS with success? I really am hopeful that, what has helped you may help me as well. I’ve watched you’re video’s, and feel a connection to you and what you have been through. I hope you are continuing to feel well everyday. Thank You so much for caring and sharing you’re journey. I have found renewed hope since finding you’re site, Thank you so much:) Big Hugs,letgetwell.