HealingWell
Search Close Search
☰

BRAIN SCAN? ANYONE HAD ONE?

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/21/2007 8:02 PM (GMT 0)
Has anyone ever had a brain scan.. (MRI probobly) to see if the Lupus has attacked the CNS? If anyone has had that done can you tell me about the scan and the findings? Just want to know what people have been thru..

thanks

Stephanie

Posted 6/21/2007 10:14 PM (GMT 0)
I've had MRI's twice (both times with & without contrast), about 2 years apart. Since I was having significant cognitive dysfunction at the time, we were looking to see if there was anything suspicious in the brain. For mine, they didn't find anything. It's a painless procedure -- you lie down & they add some supports around your head to keep it stable, then roll you into the MRI machine -- it's about a 20 minute procedure, in multiple sections of 2-5 minutes in length. Then they roll you out, give you the contrast, and do it again. It can be a little noisy in there, and a bit claustrophobic if you're inclined that way, but no pain or anything like that is involved.
Posted 6/21/2007 10:25 PM (GMT 0)

I have CNS Lupus and have been in flare since March, although it is somewhat better now.  Previous to this flare, I had been very fortunate to have been in pretty good health for the past 20 yrs. with exception of minor flares. 

I did have an MRI on my brain recently.  I wish I could tell you that it helped.  My doctor only said that it showed some white "pockets" (can't remember for sure if that's what he called them) indicative of people who have migraines.  I do have migraines with visual aura (but not a lot of pain).  I normally treat this with Aspirin and black coffee, which usually works for me.  I do not feel confident that this doctor really understood or read the MRI thoroughly.  I've only been to him a couple of times.  The MRI itself was not a big deal.....an IV in which dye is inserted for part of the procedure.  You just have to lie still for about 20 min.  They give you ear plugs as the machine makes some fairly loud noises (which didn't bother me at all).  I wish I knew what they look for in the MRI and should have asked.  My symptoms were fatigue, odd feeling of pressure in my head (up the back and over top), light headedness, malar rash, some "brain fog", etc.  No joint pain, though, and my Sed. rate was not high.  ANA was 1:1280.

I hope you'll find some answers and relief. 

Nan

Posted 6/22/2007 12:34 AM (GMT 0)

I have had an MRI done of my brain to make sure that my Lupus wasn't attacking anything.  It was the easiest test by far that I have ever had. :) 

Pretty much what Lynnwood said.  Lie on a table they scan you and then they put the contrast in and scanned again, very painless and easy.  To be honest I slept through mine that is how easy it was, but then it probably had something to do with it was the first time I had ever taken Flexeril and boy did it work wonderfully, luckily my dad had driven me to the MRI. LOL

Posted 6/22/2007 1:02 AM (GMT 0)
Hi stephanie, I had one done several years ago. It didn't have anything to do with lupus but I was in the machine for about 45 mins. It wasn't painful but I didn't like laying there that long.

Good Luck
carol
Posted 6/22/2007 6:24 PM (GMT 0)
I have actually had several MRI's. I was just more questioning the experiences anyone here has had with the brain scan and if they found any lupus involvement in the MRI... what they found in the CNS etc etc. How long did the results take to get back to you?
Thankyou everyone for your time in posting back to me. I appreciate all of you.

THankyou
Steph
Posted 6/24/2007 3:25 AM (GMT 0)
Hi Kookla--
I've had several mris of my head because of head injury and cognitive problems. They found diffuse atrophy of my brain of unknown etiology. They still can't tell me why, but my brain is twenty years older than it should be in terms of damage. Oh well, you only use a tenth. I've had contrast and none. If you take metformin, they may tell you not to take it for a few days after the contrast there is some kind of problem with both, but they will tell you. If they are good, they'll prop your head good so it can't move. It's loud and kind of long, but you get earplugs. Usually my docs have them in two days, but we might be kind of fast here. I don't know if the atrophy was part of the lupus. I also have hypoxemia--lack of oxygen-- of unknown origin also-- and it may have caused the brain damage. I don't know. I had no visible demyelination, but I'm not sure that that is the best test for that kind of thing, I don't know.
Posted 6/25/2007 12:26 AM (GMT 0)
THX Marji... I appreciate you telling me about your experience. I appreciate everyone telling me. Is helpfull. I thought I was done with suprises and tests and being in the hospital. Hopefully this is just to error on the side of caution. So we will see. I deeply appreciate the time you all take to reply... to me and to eveyone else here. Its a great place to come and talk... I discovered the Spoon Theory from Healing Well and that was like a voice from within.. It felt like my voice... It sounded like me telling the story.. I loved reading it. It gave me piece of mind and tranquility that I didnt really have before... and I did send it to people.. friends and family and if it changed just ONE persons point of view or if it opened up just one persons mind or if it gave one person insisght and knowledge into the life of someone who suffers with Lupus than I am happy and content knowing that it affected one person.. I thank the girl that wrote it for all of us to read..
Anyone that hasnot read the Spoon Theory?? Oh my goodness.. please go and read it. Its wonderfull...
Hugs... wink!
Thanks
Good night
Stephanie
Posted 6/25/2007 7:39 PM (GMT 0)
Had several myself. Looking for blood clots and swelling mostly. Oiginally for MS lesions. Nothing ever found, but basal artery insufficiency has been suspected. They did the MRI first and then the MRA. I gather they should keep watch with you with both the MRI and MRA. Do hematomas come and go? I had one in my liver that recently dissappeared. Didn't know it could do that. My blood clots were mainly in my eyes and never showed up on the MRI or MRA, but the doctors could see them upon exam. No cause was ever found. They check for CNS Lupus with the blood work. I think the LA and APS may have some bearing. Also the IgG and IgM they were looking for. They never checked my head or spine for it. Neuropsychiatric testing showed organic brain damage of unknown origin (front left hemisphere). I don't think the MRI can prove or disprove Lupus, just some diseases caused by it.

Sorry that you have also been hit hard by this. I was wondering whether or not there were others with multiple system involvement. Guess so. Do the medicines your taking work well for you? They have been suggested to me at one point or another but haven't been able to get on any. (Coumadin wasn't recommended though). Was wondering which ones I should push/fight for. When you are getting pounded all the time it is hard to know which way is up and where you should concentrate your energy. Hope to talk to you again soon - Kristin
Posted 6/26/2007 8:06 PM (GMT 0)
Hello Kristin
Greetings! Well in answere to your question regarding my meds. I am no longer on prednisone. I was on that for my Nephritis.. wich I see you also have.. but the Cellcept I am on for the kidney disease and they still have me on that. I dont know how many more years I will be on it.. but I have not spilled any protien in my urine in one year. My Nephrologist considers this remission for my kidneys... however she is keeping me on Cellcept, 500 mgs 5 pills a day. I also take Lisinopril for my kidneys. I developed high blood pressure because of the kidney probs... she has taken me down to 10 mgs of the lisinopril. But she is being very cautious about taking me off of these two drugs completely because she doesnt want me to relaps.. wich I did do when I was taken off of the prednison to quickly. I kept pushing her to take me off and she did taper me off but it was too much too fast and I started spilling protien and all that stuff.... but anyway.... I am taking coumadin because I was diagnosed with Lupus Anticoagulant Blood Disorder. So I absolutely will have to take this pill for the rest of my life. I get a blood test every week at the local hospital. If I maintain a level that is good then I can go every two weeks for my blood test. This is for life.. believe it or not.. crazy... but the doctors told me that at first they did not want me to take coumadin unless I had experienced a blood clot before. Since I never did... they never put me on it.. a few months later I had bad headaches and migrains more likely and then they did an MRI and found the clots... . I had massive blood clots in my brain... Transverse Sinus Thrombosis.. Yup! Then I was in the hospital and very sickly... for a long time.. and now I will be on coumdin forever.. So I am not sure if I answered your questions... I dont know if the meds I am on help any type of lupus symptoms or ailments other than it is mainly treating my kidneys and blood disorder....

I wasnt sure if the MRI's I have had in the past are anything like a brain scan to see if the Lupus is involved in my Central Nervous System...

Have a great one!
Take Care of yourself!
Steph
✚ New Topic ✚ Reply