NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › anyone else with EDS have pain that starts at the base of the skull with a heavy head with pain in shoulders and neck? › Reply To: anyone else with EDS have pain that starts at the base of the skull with a heavy head with pain in shoulders and neck?
Why can’t the doctors figure this out? And why aren’t my reports showing anything well they show things but the doctors say its normal but all the signs and symptoms are there! Are my doctor’s not doing the right tests. All my symptoms get wore in an upright position I’m wore in early afternoon than I am in the morning. My symptoms change so much in one day and there are so many how do you get the right answers? Are there standing up mri’s in Michigan does anyone know. Also if mast cell is a possibility what is the proper GI medication to be on? So far I’ve had good results with diamox, zyrtec,& zantac but the neck & shoulder pain is still present and the severe stomach spasms, bladder spasms are still goin down hill not getting any better. Its a big huge puzzle and getting all the right pieces in order is very difficult . Its hard to figure out which one of the 50 symptoms is the best one to focus on when all the problems change from hour to hour & come & go.. anyone else have any input:)
Hi Jamie, it is hard to correct a “dynamic” condition (it’s always changing) with a “static” medication (it offers steady changes), hence medicine is never as good as nature. But our nature is messed up, so we do the best we can! If you are still having neck pain, you want to be sure that your CO2 levels are 22 or above, or you may be too acidic for Diamox to work (a urologist can help you). Be sure to check your potassium levels once in a while, too. You may need to change your dosage a bit. Now, if all of that is in place, I wonder if you wear a soft cervical collar at night time? HUGE help. Is the head of your bed slightly elevated? You meds for MCAS sound good. Please watch the video on histamine foods, too, OK? As I mentioned, I’m working on the patent for our pelvic pain, interstitial cystitis right now. It was MARVELOUS to get rid of that! Did you return a Symptoms Checklist to me? That will help, too (it’s under “Articles and Handouts”). I use it to group our symptoms in clumps. That was the only way I could make any sense of it! Once I did that, and peeled back our symptoms a layer at a time, more became clear to me. Hang in, my friend! 😉