I’m new to all this but it’s nice to see I’m not the only one frustrated. From 2010-2012 I was seen for an autoimmune disease. Then I continued to be seen until about 2014 because my dr was 19 hrs away after I moved. I was sick for years before anyone figured it out. Her words were that all the symptoms and issues do not fit into a nice neat package so it can be hard for doctors to understand because it’s not as easy as a diagnosis of RA or Lupus which is why doctors have dismissed me before. I was on hydroxycloroquine for a while and it really seemed to help. Prednisone also helped from time to time.
Since I moved I got a primary care doctor and my symptoms started getting worse so I asked her to draw the tests my rheumatologist did. She only drew an ANA and said it was negative so she wasn’t worried about it but also gave NO explanation or anything for why I felt the way I did. I haven’t had it tested since because she refuses to and I’m worried if I go see a rheumatologist and it comes up negative they will brush me off. I have years worth of ANA tests that are high and high CRP of over 20.
Frankly I don’t care what they call it, if it has a cure or not! All I want is someone to pay attention and offer some sort of help.
Now I’ve developed high blood pressure, gained 20lbs and my kidney is enlarged. I don’t know if this is related or not but I can’t take this.
I have insomnia and sleep literally 5 hrs max a night (tried every medicine and none help) and I’m waking up 3-4x a night to pee. I finally caved and went to the urologist and he keeps this loop going whenever I ask a question like could my kidney problem have something to do with why I’m peeing so much? He just says well I’m not sure but it could be incomplete bladder emptying but I don’t know yet. He did the test in his office. Ultrasound my bladder, then I pee and ultrasound it again, no pee was left, he did a cath to check and still no pee so how is it bladder retention? Makes no sense
I was always told my AI could cause problems with other body systems and I’m not sure if that’s what’s happening. If I go into a rheumatologists office with a list of what’s going on I know they will think I’m just a hypochondriac but how else do I get this guy up to date with everything that’s going on without him requesting all my med records from a bunch of different doctors and reading through them? I’m exhausted all the time and can barely bring myself to get out of bed sometimes. I know that’s not normal but I don’t know what to do about it