21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel
Hi Amy - I'm so sorry you're having such a rough time! I don't really have any answers for you - but I have had an MRI. I'm a little bit claustrophobic, but I managed to get through it. It was a big tube. They give you ear phones with music and a little button to push if you need to talk to them or feel you need to be pulled out for any reason. So just remember you have some control over the process. It is very noisy - I have no idea why it is - but there is a hammering sound while you're in there. My husband is laying wood floor in the family room right now.....sounds about like that LOL.
My mother had one before I did. She advised me to just keep my eyes closed - which I did, and I think it was helpful. So breathe, and relax as best you can, and close your eyes and know you've managed to get through everything before and you will get through this, too.
I'll keep you in my prayers - hang in there!
I've not been posting much cause I feel so bad, but I read your post and wanted to respond. First off I'm really sorry that you're feeling so poorly. This darn disease can continue to flare even tho we're on meds. I've been in a chronic flare for 3 years now. I've taken every sticken drug and they can't do anything for me. That being said I hope that they'll get the correct mix of meds for you and you'll go into remission. If you have mulitple issues like I do it's a never ending battle to keep all the diseases uncontrol.
To answer a few of your questions. The MRI can show if you have lesions on your brain which can show CNS lupus. The MRI is used with magent imagining and there's no radation like with an xray. Also, you mentioned a possiblity of diabeties, if you're on chronic medium to high doses of prednisone it can cause diabetes. I'm on metformin as my sugars where starting to rise. When I'm really bad and in the hospital I end up getting insulin as my pred doses are thru the roof usually. I don't know how long you've been on 15 mg of pred but that will cause the diabetes I'm sorry to say. It can cause an elevated white count, suppressed immune system and easy brusing in case you didn't know.
I'm gonna keep you in my prayers and if I can be of any help, drop me a note here and I'll see it and I'll try to help. I know this is all upsetting and frustrating. I've had lupus for 23 years now and since June 2001 I've only gone down hill. After being treated with everything and developing blood cancer or also known and smoldering luekemia, I'm now gravely ill and need a bone marrow transplant in addition to fighting my lupus and RA and the fibro on top of it. Even tho my life seems mostly like crap everyday, I still keep fighting to stay alive. Don't ever give up Amy dig deep inside yourself, mediate and the forge ahead. I know this road seems hard to walk and it's lonely, but we're all here with you and understand. I hope the MRI goes well and know you're being thought of.
I think Carol has a really good point, Amy. I can understand you being fed up with all the testing and worrying, and getting lots of "semi" answers.....but catching something early and getting treatment sounds like a much better scenario than waiting to see how bad things might get first. I was terrified of getting a heart catheter.....beyond the norm....I was sure it would lead to open heart surgery, and mean the end to life as I knew it. I mean, seriously, I was really really stressed about it (lots of heart disease in my family). But a workout buddy who had been in the military most of his life said to me "We're not going to worry about the what if's - you're going to get this test, and if it shows something needs taken care of, then it'll get taken care of. Period. It's one foot in front of the other." That helped calm me down a lot. That and the little valium they gave me just before the procedure took care of any and all apprehension. And everything was fine.
That said - I also respect your right to hold off and follow your instincts on this - to a point. You've been through so much already - you've got a LOT of spirit and strength, so don't let your fear grow legs and run off with you now. I'll keep you in my prayers, and hope that all goes well at your appt. on Monday. It's good your monitoring your blood sugar and BP.