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Old 07-09-2012, 02:59 AM   #1
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Update... new MRIs, etc.

Hi, all! I've not posted for awhile and thought it was probably time for an update. I had about a 10 day mini-relapse in April with diplopia again, wore out the toes on some of my favorite shoes, tried to wear out my knees, etc. Since then, I've been fairly stable though with just enough buzzing and dragging to remind me that I'm not quite "recovered".

This month I have my next set of followup MRIs. One of my back this week without contrast in an open MRI. And then another in the closed machine with contrast of my brain and C-spine. Will these be the ones that clinch the dx?? Who knows. But, I'm in the half-way giving up mindset and am just trying to take it as it comes. I think the stress of pushing for answers was causing me more harm than good.

Another good thing, I think, is that I finally made an appointment for an MS specialist in Chicago which is coming up in August. So I'm planning on getting my MRI results and taking the stack of test results from the last year to see the MSologist and see my family next month. Hoping the heat lets up over there before then.

How are YOU lately? I go back and forth between checking in and trying to stay off the computer, but I have thought of you all and hoped that you're surviving the heat for those of you battling that right now.

Hugs!
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Old 07-09-2012, 04:41 AM   #2
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Re: Update... new MRIs, etc.

Hi Dogmum!

Good news! Hopefully your tests will show something conclusive this time! And even better news that you will be traveling to Chicago for some interpretation! This is all very positive.

I do wonder though, why the open MRI for the back? Im glad to hear that your brain and Cspine are going to be enclosed and with contrast, as open MRIs are not the standard for MS testing....however, why did they schedule this for you this way?

Nevrtheless, the two more important tests appear to be on track~ so crossing fingers that you get the results you want to hear!

It is majorly hot here in the East Coast right now, it was over 100 degrees F for a week straight...but finally the heat has broken~ whoo hoo!!

Keep us posted.
Nikki
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Old 07-09-2012, 06:03 AM   #3
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Re: Update... new MRIs, etc.

Thanks for the update and congratulations on the appointment in Chicago. I know August (at least it is not July ) is not a comfortable time to visit the Midwest, but still I am glad you could get it arranged. Just keep plodding along one day at a time.
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Old 07-10-2012, 01:51 AM   #4
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Re: Update... new MRIs, etc.

Glad the heat has broken, Nikki! My parents have been sending me pictures of their thermometer and I've been thankful for my mountain air (even if we've been in the low 90s as well in the last few weeks!).

I have no idea why they scheduled me for the back in the open MRI, but I've given up on this part. Another thing I noticed last night is that my GP, who has to script it for my neuro, ordered lumbar/sacrale part of the back and not the thoracic spine. Oh well. Win some / lose some, right? I'm glad we're making progress though. My neuro said something about giving a double dose of contrast on the brain/c-spine part when looking for MS, so I'll be curious to see what they do there.

I have to admit though, I don't have high hopes for them finding anything different on this one. Other than a new tight/heavy feeling that comes and goes in my left leg, most of my symptoms from before are very light or gone. We'll see. I'm not feeling any rush at the moment as you can see.

Jayhawk, very true that the midwest in August is not at it's best, but one very attractive feature about being there in August rather than here is the fact that almost everywhere is air conditioned over there. I might pick up a cooling "necklace" while I'm there as well to help with the heat as well as another pair of prescription sunglasses that are way cheaper over there.
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Old 07-30-2012, 01:42 AM   #5
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Re: Update... new MRIs, etc.

It's "MRI-with-contrast" day! I'm trying to keep my nerves under control and not daring to hope for any answers, but still silently keeping my fingers crossed that I'll get some. The contrast is the worst part for me, but I started my pre-treatment for that last night and I'm glad it will be over soon. Any advice for getting through the hours in the tube?
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Old 07-30-2012, 04:43 AM   #6
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Re: Update... new MRIs, etc.

Laura, It shouldnt take hours. It takes me under an hour to get a full Brain, Orbitol and Spine MRI with and without contrast....

Why would it take hours?

The only advice I can give is NOT to move. If anxiety and panic are part of the problem, can you take a Xanax or something pre test, to relax you? If that isnt the problem, can you just keep your eyes closed. Ive found that if I shut my eyes while they roll me in and keeep them shut, I dont really think about it. My tech talks to me and says things like "this next sequence will be 4 minutes" and then it starts. During that time, I make up songs- stories- think about all of YOU guys- and try to pass the time. But its key, not to move around...especially the Cspine- you dont want to swallow hard or disrupt the imaging.

Just remember how important it is, and you already know its painless- so try to just "go with it". And, let us know how you make out!

hugs
Nikki
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Old 07-30-2012, 07:40 AM   #7
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Re: Update... new MRIs, etc.

My time in the tube is spent "sawing logs". The monotonous sound puts me out within 5 minutes. I have yet to stay awake through any of my MRI's except my first one in 1982- then it seemed like something out of Star Trek!

I would probably say to relax and focus your thoughts on other things.
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Old 07-30-2012, 09:27 AM   #8
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Re: Update... new MRIs, etc.

Nikki - I have no idea why it should take hours, but it does. I was in by 1:30 and got out at 3:40. This was for brain and c-spine - no orbits, no t-spine. I can only assume that things are different from machine to machine. This hospital, for example, straps me in (in my undies) with a kind of helmet, earplugs, and very pinchy tight padding everywhere. At the other hospital I had head to t-spine done (without contrast) in less than half an hour, in my clothes and was told I could even keep my flip flips on, no strapping in and no helmet, but the images were not half as clear as the ones from the hospital where I was today. *shrugs* As always, things are different here.

Jayhawk, I wish I could sleep!! I ended up making songs to the time of the noises and wondering what time it was most of the time.

No contrast reactions so far, thankfully. Now to await the results.
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Old 07-30-2012, 10:21 AM   #9
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Re: Update... new MRIs, etc.

I think your comparison of your MRI's today and previous show a great contrast. The MRI you had today is the type of MRI I have always had. I believe the "lack of decorum" in your first MRI could be a reason you did not get very far.

As to all those songs you made up, you better pen them quickly lest you forget them!

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Old 07-30-2012, 03:27 PM   #10
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Re: Update... new MRIs, etc.

Hey Laura,
Well Im glad to hear no reactions to the contrast anyway...thats good. When I have my MRIs done. I usually wear sweats, with no zippers or metal- no bra. They do strap me in (so to speak) by putting the entire cage (Hannibal Lecter Style) over my head, earplugs are in and they put ear padding over my ears as well...this is actually so that you cannot move your head around during the test. The rest of me is not strapped down and usually I wear socks in there, its cold in the MRI room! I ususally wind up holding my hands together because Ive been known to doze off too- and when I do, I either jerk my hands or my feet....Ive been yelled at before. (wink).

You should have results shortly, right? In my hospital, 3 days is max...usually they are in before that. Let us know what the test shows...Im crossing my fingers for you.

Hugs,
Nikki
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Old 07-31-2012, 01:11 AM   #11
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Re: Update... new MRIs, etc.

Nikki, I wish they had let me keep my pants. I wore soft yoga pants in the hope that they'd let me keep them on this time, but no such luck. Got to wear a nasty green little disposable gown that made the urge to itch nearly unbearable... hehehe! Next time I'm coming to your hospital!!

Jayhawk, you can trust me that none of the songs I came up with were worth writing down for later enjoyment. Haha! I was going more for quantity than for quality.

I saw my results online. They basically read "no significant changes since the MRI done in October." It's bittersweet because I don't want changes, but without changes - no dx. Oh well. I'm still working out how to feel and what to do about all of this.

Hope you're doing well. *hugs*
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Last edited by dogmum; 07-31-2012 at 01:35 AM. Reason: typo

 
Old 07-31-2012, 03:45 AM   #12
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Re: Update... new MRIs, etc.

I dont know Laura, if I were you, Id be grateful for the no changes...

I just had my yearly MRI which was mind blowing, remember? Ive got so much change on it that its unexplainable- especially since I have no symtoms at all. clincially Im more stable than I have been in 8 years...radiographically, I am all over the place! This is actually much scarier than it sounds, because once the damage starts moving- anything is possible. My next silent attack could be the one which disables me. Because of this, Im considering whether or not I want to start a new med. Its a very tough decision, especially since I feel so good.

Id be leaning towards being grateful for the no change status! Congratuations..thats really great news, and to think you didnt have a reaction to the contrast to boot! Id say it was a very good day for you!

Nikki
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Old 07-31-2012, 07:18 AM   #13
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Re: Update... new MRIs, etc.

No change is not a bad thing when you think about it. Your body might be sustaining you better than you know. While it leaves you in limbo land, you are still not alone and you still have plenty of people here for you and lifting you in prayer. You should repeat the MRI within 4-6 months to remain vigilante. If something does present, have a plan to be seen ASAP. Stay strong!
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Old 08-01-2012, 08:21 AM   #14
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Re: Update... new MRIs, etc.

Very grateful for no changes, if the truth be told. I am disappointed not to have any answers, but have decided that it's better not getting answers than getting answers that mean things are progressing. Thanks for your support and prayers, guys! I really appreciate them!

Hugs...
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Old 08-01-2012, 08:37 AM   #15
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Re: Update... new MRIs, etc.

Stay strong, we are in it with you for the long haul!
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