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....I feel for you, my life has turned around too with other illnesses and I long for the past.. and worried about future: I do not know much about your problems but one thing , and maybe I missed it, if they cannot do a CT scan whil eyou are standing up, can they do an MRI while you are standing up? J. I went to our emergency dept yesterday and it was not an Emergency, i waited til I saw on line not too busy... was prepared towait hours... it was cos i dont have dr and walkin clinic gave me stong meds for something and I am not supposed to take them..(another story).. I said I realize its not an emergency but coudl you help... they were great and I know it was not as serious and complicated as your issues, but maybe try again, or is there another local hospital or one not too far away where you could go: wishing you the best... hope you get some help on here.. J.
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After using AI, my husband and I are convinced I need a standup CT or something like it. I have been told that the state I live in does not have anything like that. (It is one network medical team) We found that Mayo Clinic supposedly had a Standing CT Scanner. But I do not know for sure.
My issue is definitely gravity/mechanical related. I have had a feeding tube for 4 days now, but I can only run it at 45ml per hour, which means it has to run 24/7 to help me not lose anymore weight. It has helped with the headaches I have had for the last 11 months but not the pain/pressure in my belly.
Where we live there is only one network of medical professionals all connected to the ONE hospital each county has. We do have a new network trying to come into the state but it has been a very slow process.
We had coordinated with family members to use their RV to get me to Arizona’s Mayo Clinic’s and we were so hopeful. Unfortunately Mayo rejected me and I honestly believe it is because the referral they received was so poorly documented that they felt this was something that could be handled locally. I know this because after we were declined, we got the clinical notes and my symptoms were so poorly documented. My husband who was at every visit with me, was stunned that a medical professional would be so bad at chart notes. A patient’s life depends on the information being accurate. Especially in the state I live in, where every doctor has access to the same notes.
One thing I have realized by reading all the post on this site is that Gross Hematuria can be something that just happens and that lots of people have had it for years. The other thing is that there are people in worse shape than me that are still alive and looking for answers.
I was at the point of believing my doctors truly did not care about me and I must have done something wrong. But like someone else wrote. There are many medical professionals that are just too busy to solve medical mysteries.
Thanks for taking the time to share your experience with me.- -KC