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Old 02-11-2010, 06:58 PM   #1
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validity of post-IVSM MRI

hi there,

i can't remember in which post i read that having an MRI shortly after IVSM will not provide accurate results. as i previously mentioned, i had my 3-day IVSM course last week and just had a 3T brain MRI w/ contrast yesterday and now i am concerned about its accuracy.

yes, i'm overthinking EVERYTHING right now. still a bit gacked from the 'roids.

binx

 
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Old 02-12-2010, 05:57 AM   #2
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Re: validity of post-IVSM MRI

Binx, it was probably me that said that. They normally dont repeat a MRI until about a month after IVSM- although it wont show false things, it might not show new lesions, which can be masked by the IVSM.

You shouldnt worry about it. Base things on how you feel...however, if you start having additional symtoms, you might want to talk to your doc about whether or not he thinks you should repeat the MRI.

It didnt hurt you that you had that test, it just might not be as conclusive as it could have been...Dont overthink it. Go with the flow...how are you feeling anyway?
Nikki
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Old 02-12-2010, 11:26 AM   #3
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Re: validity of post-IVSM MRI

hi nikki,

thanks for the clarification about the post-steroid MRI and for inquiring about me. i am actually feeling really terrible and i am not sure exactly what to think about it. it seems like the steroids have aggravated my symptoms rather than help ease them. my lymph nodes in my neck were all swollen but have since gone down which is a relief since i was worried about being completely devoid of immunity since i am already on plaquenil. i wake up and i am really shakey, i am pale as a ghost and although i expected to be ravenous after the infusion, i have had very little appetite.

i'm just trying to stay calm and tread water while i'm waiting for the new brain MRI results. i also see my rheumatologist on tuesday and will run all of this by her to see what her thoughts are. i spoke with my neuro-ophthalmologist briefly the other day and he is not convinced that what's going on with me is MS since he said the myelitis could be a result of the vasculitis he saw in my eyes or some other autoimmune process. he said that although it is not that uncommon for people to have MS and other autoimmune diseases, for them to onset simultaneously would be highly unusual.

this is all just so overwhelming for me and my husband, but i am trying really hard to stay grounded since like you said, stress only makes things worse.

thank you for your continued guidance and support, nikki. i hope you are feeling okay yourself.

best wishes,
binx

 
Old 02-12-2010, 02:11 PM   #4
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Re: validity of post-IVSM MRI

Hugs Binx...keep me posted on what happens with the Rheumy and Brain results...youre in my thoughts. Im having a good week, considering all Ive done is shovel snow and navigate bad roads!! Overall, Im hanging in there...
stay well.
Nikki
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Old 02-21-2010, 10:54 AM   #5
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Re: validity of post-IVSM MRI

Quote:
Originally Posted by MSNik View Post
Hugs Binx...keep me posted on what happens with the Rheumy and Brain results...youre in my thoughts. Im having a good week, considering all Ive done is shovel snow and navigate bad roads!! Overall, Im hanging in there...
stay well.
Nikki
hi nikki,

i got my 3T brain MRI results back--had to go pick them up from the imaging center myself since my neurologist never called to tell me what was going on. at any rate, the scan was negative for any abnormalities. i keep thinking about the proximity of the scan and the IVSM, but since i had a normal 1.5T scan in 12/09, i am trying to remain confident that the results of this most recent MRI are valid.

i also saw my rheumatologist on tuesday and we had a very long talk about what she still suspects is an unidentified autoimmune problem that is affecting me systemically, along with the possibility of my having MS. she recommended that my husband and i begin to make some decisions about how we are going to tailor our lives around my illness, etc. etc. which was hard to hear, but we know she's right. i told her i was looking for a 2nd opinion neuro at our local university medical center and she also spoke very highly of their MS clinic and said i would get good information from them as well.

at the end of our visit, she took the CD of my c-spine MRI from 3 weeks ago into her office to look at the offending lesion, then she came back in to the the exam room with a very perplexed look on her face. she said, "i'm no neurologist, but i don't feel comfortable with an MS label for what's on that MRI." she changed her tune about the MS clinic and gave me the name of a general neurologist at the university medical center instead.

as you can imagine, i left there feeling very confused, and my head is still spinning. i have an appointment in 3.5 weeks with a new neurologist who specializes in diagnosing difficult cases, so i am hoping he can help us get to the bottom of this.

just wanted to give you an update. i hope you have all recovered from the big snow from last week!

best wishes,
binx

 
Old 02-21-2010, 07:21 PM   #6
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Re: validity of post-IVSM MRI

Hi Binx. Sorry to hear this isnt doing anything but confusing you! I had hoped, for your sake, that youd have conclusive answers...

All I can say is that it sounds like your Rheumy has some good advice and that your next appointment will shed more light on what is going on. Ill say a prayer for you.

I had an MRI on Tuesday- and have a follow up this tuesday with my Neuro, however, he sent me the report, and it appears there are no changes in my MRI, which means Rebif is doing what its supposed to be doing; however on my Cpsine is much change in my disc issue- explaining my back pain. And, now Im probably looking at surgery on my neck at some point.....the pain is getting seriously worse and the degeneration and bulding of the disc is substantially worse then 6 months ago. Now, im scared!

Ill keep you posted too....hang in there my friend....answers are coming.
Nikki
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Old 02-22-2010, 03:40 PM   #7
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Re: validity of post-IVSM MRI

hi nikki,

thank you, as always, for your response. this whole thing has been so crazy making, i can't even believe it. i have never wished for 3 weeks to pass as much as right now. i am on pins and needles (yes, pun intended) and cannot wait to get in to see the new neurologist.

it is great news that you don't have any new lesions and that your medication is doing its job, but i am certainly sorry to hear that your disc is acting up on you and causing you pain. i can totally relate to that with my c5-6 herniation and surrounding level bulges. which one of yours is giving you all the trouble? i know i will have to have surgery myself one of these days for my herniation since it's making a 2.5mm dent in my spinal cord, but i just want to get a diagnosis for all the other stuff first!

take good care and i hope you find some relief from your neck pain. i know how much it can hurt. i use biofreeze gel sometimes and that helps a little bit.

thank you again for your support, nikki. you are a gem.

best wishes,
binx

 
Old 02-22-2010, 04:25 PM   #8
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Re: validity of post-IVSM MRI

Hey Binx,
Didnt know you had similar problems. My herniation is C3-C4. I also didnt know about biofreeze gel, but ill look for it and see if it helps. They do think this is what is causing most of my numbness in my fingers...which is interesting. Everyone is telling me DO NOT have surgery! Since I work around docs and nurses all day long, they all have horror stories...Im scared to death. Dont know what to do! I am grateful for the MRI though and the fact that my meds seem to be working...thats the only good news Ive gotten this year....
I, too, am counting down the next 3 weeks. I leave for St Lucia on the 13th of March and never in my life have I wanted a vacation as badly as I do right this minute. So, I might not be here to hear your news when you get it, but you can be sure Ill be checking in as soon as I get back home!
Youll be okay- I promise. MS is not easily diagnosed and you do NOt want a wrong diagnosis! Keep doing what you are doing and stay strong!
Nikki
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Old 02-23-2010, 08:03 PM   #9
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Re: validity of post-IVSM MRI

hi nikki,

yes, my c-spine is a mess, and the herniation and spondylosis were the original diagnosis for what has been going on with me for the past year. it is still unclear as to what role, if any, it is playing in my current state. there is a great spinal cord disorders community here on healthboards that i used to frequent when surgery seemed like it was going to fix my problems, but since i have been dealing with all these other issues, i haven't spent much time over there. i'd recommend you post any questions you may have about surgery to that board as there is much wisdom and experience, like here on the MS board, to help you be informed.

how exciting for you to have a fabulous vacation planned. i hope you have a wonderful time and i will be sure to let you know what happens at my 2nd opinion neuro appointment.

as for now, i am 2.5 weeks out of the IVSM and saw no change with respect to my symptoms. all the infusion did was make me feel like i was perched on the edge of a cliff and just about to fall off for 5 days, then i couldn't get out of bed for 4 more days, my lymph glands in my neck swelled up and i basically felt worse than i have in months.

i don't know what to make of that at all. all my dr. said was "that wasn't expected." i guess we'll see what the new guy has to say next month.

take good care and blessings to you, nikki.

binx

 
Old 02-24-2010, 05:03 AM   #10
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Re: validity of post-IVSM MRI

AAAAW Binx....hang in there, ok??
I have been asking questions on the spinal board here, and have gotten some excellent feedback, your right. However, at this time Ive decided that Im doing absolutely nothing until Im forced into doing something. I think my head will explode if I worry about one more thing....with work being so busy, school really getting busy and my kids are tired of winter- im on the verge of falling of that cliff with you.
Keep us posted on what your doctor says and know Im thinking of you ..
N
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