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Deemarie1223
08-30-2012, 08:49 AM
Ill be having my ! mri at 5pm eastern time tonight:( a little nervous but its gotta be done! We are trying to rule in/out lupus/MS or both. This will help with the MS dx. I don't want both, I don't know which is the lesser of twl evils. I'm more scared of MS because this a new thing being brought to my attention, where as with lupus its been a "possibility" for so long, I'm used to it. So if you could pray, send good vibes/thoughts, cross your fingers,or whatever it is YOU choose to do for me tonight, id love it. I'm scared. I don't want both, I have symptoms of both but I know they can often mimic eachother as well. Ill updte as soon as I know something! Thanks for all the support here! If it turns out to be MS and not luppus, id be sad to leave here:(

MorrisonGal
08-30-2012, 11:10 AM
Sending my comforting thoughts and best wishes to you Deemarie! I know how scary it is to get any diagnosis, but also there is this feeling of at least now you know what's wrong, and there is somewhere to start the healing. I applaud your efforts to keep on with the testing until you find out. When I first started to get bad lupus symptoms I had an ER visit where I had a headache for days, chest pains, and my feet, hands and face were numb, and the ER doc thought I might have MS. It was a couple more years until I was diagnosed with lupus, and that whole time I didn't know exactly what was wrong. When I was diagnosed with SLE and Sjogrens, both of which I never considered before, I read up on them and was like, oh, now all the stuff going on with me makes sense.

n.mac
08-30-2012, 04:56 PM
Good luck-the more they know the more help you can get-personally I don't care what they call it as long as they treat it!

kim,l
08-30-2012, 05:17 PM
deemarie take my new friend hope they find out for sure whats wrong . so you can get some answers hugs kim

Deemarie1223
08-30-2012, 05:35 PM
I couldn't agree more n.mac and thanks kim! It was not a fun procedure:( but I know I need to do it. I'm hoping it helps confirm or not a lot of things! Ill keep you posted!

rob
08-30-2012, 06:03 PM
Ill be having my ! mri at 5pm eastern time tonight:( a little nervous but its gotta be done! We are trying to rule in/out lupus/MS or both. This will help with the MS dx. I don't want both, I don't know which is the lesser of twl evils.

Hi Darla,

I have both SLE and MS. For me, SLE is the lesser of the two evils, but not by much.



If it turns out to be MS and not luppus, id be sad to leave here:(

Don't worry, actually having Lupus has never been a membership requirement here. Over the years we've had many members who have come here pre-diagnosis, made friends, and got settled into our community only to find out that they don't have Lupus. They are all welcome here regardless of diagnosis.


Rob

Deemarie1223
08-30-2012, 10:11 PM
Rob- thank you so much! First for telling me you have both, so that gives me comfort knowing IF I do, there's someone else! And for making feel welcome if it turns out to be be MS instead. What did you get dx'd with first? What were your ms symptoms that were different from your sle symptoms? I'm going crazy over this...and just like everything else the techs"can't tell you anything". I kinda half jokingly said "so did ya find any massive weird things in my brain?" she said " we can't tell you much, we just take the pictures, then hesitated (cuz you know they know a little about what the saw) and said "put like this, if it were anything major you wouldn't be leaving right now" I said " yes, but your talking about rumors and such, if you saw any ms indicators you wouldn't keep me, that's not an emergency" still w hesitation she just said "your right" so of course I'm reading into it all night, wishing I knew more. I didn't even see the pics, the closed the computer screen right as I walked out of the MRI room. I guess I'll have to wait till Tuesday, but I'm holding onto a little hope that they will call tomorrow afternoon. Anyway, Ty again for sharing and I'm glad I can stay no matter what!

Ps-sorry about all the typos, I noticed them in the quote lol, I type on the iPad so fast and w auto correct, sometimes I don't make sense!

Deemarie1223
08-30-2012, 10:16 PM
Oh and just to add, with my history of bad luck, it never fails....the right headphone didn't work so it was loud and the station they had it on played commercials the ENTIRE time, I heard 2 songs. No one told me my head was gonna be totally encased either like a giant, hard, uncomfortable helmet. When she snapped the face mask thingy on, I almost freaked out! but the commercials drove me nuts...I left with a massive headache! I might have to have another one done with dye injected, oh joy! Do you get them done rob? Sorry so many ?s but thanks for being informative! Off to bed I go now:)

Derrie
08-31-2012, 05:43 AM
Oh and just to add, with my history of bad luck, it never fails....the right headphone didn't work so it was loud and the station they had it on played commercials the ENTIRE time, I heard 2 songs. No one told me my head was gonna be totally encased either like a giant, hard, uncomfortable helmet. When she snapped the face mask thingy on, I almost freaked out! but the commercials drove me nuts...I left with a massive headache! I might have to have another one done with dye injected, oh joy! Do you get them done rob? Sorry so many ?s but thanks for being informative! Off to bed I go now:)

When they're looking for MS, they should always use contrast dye, which is injected via IV midway through the scan. The contrast dye makes active lesions "enhance," or appear brighter on the scan.

(Over the past year, I was sent to a neurologist and evaluated for MS-- three MRIs! But, happily, my brain and spinal cord look "perfect," so my paresthesias are almost certainly connective tissue disease related, not MS disease related. Here's hoping for good news for you too, Darla!)

rob
08-31-2012, 08:55 AM
What did you get dx'd with first?

Hi Darla, I was diagnosed with SLE first in 2004, and then I was diagnosed with overlapping Secondary Progressive MS just about three years ago.



What were your ms symptoms that were different from your sle symptoms?

The MS specific symptoms I had were numbness in both legs from the hip down to my feet, and at other times no numbness at all but then I'd have a total loss of muscular control in my right leg. I'd be standing, and it was like someone flipped a switch and my leg just went limp. Cracked my head on the edge of the kitchen counter the first time that happened. My right foot would also drag while walking. I also had nystagmus, which is an inability to read or focus on close objects because of rapid uncontrolled eye movement. That was more frustrating than the leg thing.



I'm going crazy over this...and just like everything else the techs"can't tell you anything". I kinda half jokingly said "so did ya find any massive weird things in my brain?" she said " we can't tell you much, we just take the pictures, then hesitated (cuz you know they know a little about what the saw) and said "put like this, if it were anything major you wouldn't be leaving right now"

When I had the specific MRI that was going to be the first one they used for the possible MS diagnosis, I knew that the MRI techs wouldn't tell me what they found. I wanted some answers now, not later, so In the days before the MRI appointment I read up on typical MRI findings for MS patients and I learned and memorized a bunch of the technical lingo. When the MRI session was over, I asked them in the most professional sounding voice I could muster if the white matter lesions were Cortical or Periventricular, and if they were predominantly diffuse or asymmetric. Without thinking, they just started telling me everything like I was a Dr. or another MRI tech. When they realized what they had done, they had already told me all I needed to know. Both of them had that oh s**t we screwed up look on their faces. I told them don't worry, I'll never tell! One of those MRI techs is still there, and we laugh about it evertime I go in for tests.

rob
08-31-2012, 09:10 AM
Oh and just to add, with my history of bad luck, it never fails....the right headphone didn't work so it was loud and the station they had it on played commercials the ENTIRE time, I heard 2 songs. No one told me my head was gonna be totally encased either like a giant, hard, uncomfortable helmet. When she snapped the face mask thingy on, I almost freaked out! but the commercials drove me nuts...I left with a massive headache! I might have to have another one done with dye injected, oh joy! Do you get them done rob? Sorry so many ?s but thanks for being informative! Off to bed I go now:)

All of my MRI's are done with the contrasting agent. It's like an IV, they just plug you in and fill you up. The helmet thing can be freaky, especially if you are claustrophobic. I used to drive an M-1 Abrams tank in the Army, so tight spaces accompanied by loud noise doesn't bother me.

The place where I get my MRI's done has the headphones but instead of radio, it's a CD player. You can listen to CD's they have there, or you can bring your own. I usually take a couple of Pink Floyd CD's. The helmet contraption they use also has this thing that looks like the rearview mirror in your car. It's in front of your eyes and angled so you can see out into the room past your feet. It's better than just staring at the white plastic on the inside of the helmet.

Rob

Deemarie1223
08-31-2012, 09:25 AM
When I had the specific MRI that was going to be the first one they used for the possible MS diagnosis, I knew that the MRI techs wouldn't tell me what they found. In the days before, I read up on typical MRI findings for MS patients and memorized a bunch of the technical lingo. When the MRI session was over, I asked them in the most professional sounding voice I could muster if the white matter lesions were Cortical or Periventricular, and if they were predominantly diffuse or asymmetric. Without thinking, they just started telling me everything like I was a Dr. or another MRI tech. When they realized what they had done, they had already told me all I needed to know. Both of them had that oh s**t we screwed up look on their faces. I told them don't worry, I'll never tell! One of those MRI techs is still there, and we laugh about it evertime I go in for tests.

That's funny rob! I should have done that. I did ask if the test (without dye) would be enough to show indicators of MS and they said yes. They said if there's anything questionable they would call me back in just do the sye portion of the mri. The reason why I didn't have the dye was because my doc ordered it without and for my neuropathy (even though we specifically talked about MS) and they techs would have done ir but because it wasn't ordered, insurance wouldn't cover I would hav been stuck with the bill:/ I just hope they can get what they need from what I had done. I don't mind going back for the dye (although I wish they did it first) but I DON'T wanna have to go back a million time either! Thanks for the info derrie and rob an





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