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Does anyone know of the new MRI machines that do not require contrast dye injection, and if one is in Los Angeles? Matia said one of her patients told her about them/had a connection, but she can't remember who. I'm supposed to get MRI of brain without and then with contrast dye (they say it's the only reliable way to see if brain lesions for MS, to compare the two; regular MRI has high false negative rate). But in my research online re: the dye, gadolinium, it caused a serious disorder in supposedly only people w/ kidney/liver issues, but beyond that I found many disturbing anecdotal posts from people (w/ no apparent kidney/liver issues) who became seriously & permanently ill afterwards. Esp concerned for me in my sensitive, react-to-everything chronic illness state.
I've tried researching, can't find much... one site referenced the Siemens Magnetom AERA, said only 11 hospitals in US have it, but can't tell if that one for sure requires no dye & still gives equally good results.....looks like there could be other types of MRI machines but can't get good details. Thank you in advance for any help/leads you might have. love & wellness
Contrast Dye
Hi IC-Hope,
I am very interested by your posting. Recently I was hospitalized for chest pain and a rise in my cardiac enzymes, which denotes damage to the heart muscle. I had two CT scans- both with dye and had no clue how toxic this dye is... until I got home and did some research. I have not been able to find very good sources for info about the dye.
Do you know if the dye used in CT scans is the same as the dye used in MRI? I have not been feeling very well after my hospital stay- different from heart stuff that put me in and I am wondering if the dye had something to do with it.
What are some of the anecdotal side effects listed by patients?
Thanks, Katie
MRI dye is different from CT dye
Katie - So sorry to hear of all you're going through.
My question was different as it was for MRI scans which, if requested to be with contrast dye, use gadolinium.
Both my doc and Matia were clear that CT scans use a different dye, iodine. Although you could've had a specialized/different CT I'm not aware of, so don't assume it was that, I would call your doc/hospital to check.
The anecdotal side effects for MRI dye range across board completely. Here is one place I found stuff: www.usrecallnews.com -- search for mri/gadolinium.
Thinking Good Thoughts!
IC Hope,
Thank you for your sweet and (quick) response! I am sending good thoughts your way... as it sounds like you have your plate quite full as well:) .
It seems that the iodine dye I had with my CT scans seem to cause less long-term reactions. This roller coaster ride of health has been so bizarre lately that I thought I might research the dye as a possibility. Frankly, I don't like the idea of any of these invasive tests and yet, I am so thankful to have the modern options for information.
I am in Cleveland, Ohio and the Cleveland Clinic (I believe) has a no dye MRI. I expect it would not help you in Cleveland, but perhaps they would know where the other machines reside.
It sounds as though you have really done your research. I wish you the best,
Katie
MS
Dear IC-Hope,
I know that the stress of tests and waiting for the results is SO difficult. Are there real concerns for MS - or just to make sure?
I am sending you all of my best thoughts - what does Matia say about all of this.
HUGS!
Was doing better w/ my legs then
Was doing better w/ my legs then it spread to arms and elsewhere (after a period of lot of work/stress and less sleep, so perhaps I did it to myself or maybe would've happened anyway?)... legs are also worse now but that's since I took a trip where more stairs/inclines, pushed myself too much I guess. Worst part is the arms b/c can't use them much, so I'm back to not driving/working/cooking/living really... I am devastated and terrified... Matia wanted me to see MD and to rule out so she covers responsibility to herself & me... but she doesn't think MS likely (she thinks it's extreme IC/detox reaction albeit very aberrant), and even the MD didn't think MS particularly likely (and also last year had extensive tests to rule out stuff & docs said MS not high on their list and no MRI necessary, but that was when just in the legs -- now the MD said since it's in arms and elsewhere, we want to rule out).... But after researching MRI dye, I am extremely uncomfortable (even though the big issue was people w/ serious kidney/liver problems, and the only others were handful (but still several hundred) anecdotal stories of issues after the dye. Esp wary for me since my body is clearly overly sensitive/imbalanced. I think I will ask if I can wait a few months, esp as I still am on the Elavil (went on last year when legs bad b/c mentally losing it), which Matia thinks could be causing/complicating things & wants me off of it, but she wants me a little stronger before I do-- perhaps catch-22.
I don't know how to hang on thru this after several years already of such struggle. I used to look at posts and feel bad for those 'extreme' cases but I admit inside there was that feeling of 'thank god it's not me.' Now I've become one of them... perhaps her worst, I don't know. Yes, she healed my bladder basically completely, and then got legs significantly better, but this is now in so many places and so extreme, as she often comments how extreme my things are or bizarre in how they come on, which does nothing to alleviate my fears of course. I can barely talk to anyone, hard enough to rehash over and over the latest news, but you caught me in a moment so thanks for even asking & for your support. xx
IC-Hope
You have been one of the few people that has ever acknowledged me when I mention my history of breast cancer - which has made the IC strange symptoms often terrifying to me - and left me feeling very isolated. So, please know that you are a very special lady who has a tremendous amount of inner strength. You, the you inside, under all the physical crap, the part of you, that really matters, is safe, Maybe, in the midst of your fears, this sounds like crap. There are many times that it still sounds like crap to me.
You thank me for asking - I thank you for the kindness that you've always shown me. I can be found at greatworker1@hotmail.com
IC- Hope Oh (((((HUG))))))
IC- Hope
Oh (((((HUG)))))) I am so so sorry to hear about this. That is just terrible. I do think you are right to be wary of the dye. My aunt has chronic debilitating pain etc that began with a back injury then she had some kind of scan that used dye (this was 25 yrs ago at least so not sure if it was MRI or what) and she reacted allergically to the dye. It has caused a cascade of health problems for her.
I am so sorry you need to decide these kinds of things. I can only imagine the fear and pain you are suffering. Please accept my prayers and good thoughts for you.
You are in my prayers. Get
You are in my prayers. Get well soon.
Prayers
Denise and IC- Hope,
IC-Hope- I really like your comment that the part of you that matters is safe despite all the physical stuff. I absolutely believe that to be true....especially when the medical issues are so mysterious and scary.
I am keeping both of you in my thoughts and prayers. Denise-please keep us updated! Sending good thoughts your way!
Katie
Thank you Katie
Thanks for your kind words - and welcome. I hope that all is going well.
Take Care
thoughts and prayers
Sending them both your way! Fingers crossed for good news and progress soon!
As far as I understand, MRI
As far as I understand, MRI without dye is a safe procedure; I mean within certain norms, not terribly dangerous. Is it right?
I was told it was like having
I was told it was like having 50 xrays.
I was told it doesn't use
hmm...I was told it doesn't use radiation at all. 50 x rays sounds scary!
MRI
Hi IC Hope,
I'm so sorry to hear about your struggles. In the years that I have been participating on this board I have seen you provide so much hope, helpful, encouraging and positive feedback to Matia's current and prospective patients. Your struggles have seemed numerous and very unfair.
Please keep what hope you have. I think this can turn around for you. I will keep you in my prayers.
I have recently had a contrast MRI in my left hip (in April).
I won't bore you with the details of the MRI on here -- but please e-mail me you want to chat or talk more in depth.
What I can say is that I had the injection in my hip joint, and I did very well following the injection. I was nervous it would send my IC over the edge, and I asked about not having the contast material for the same reasons you fear it -- my over-sensitivity to all this foreign and chemical. They insisted that without the contrast material, the MRI would be useless to me. So I went ahead with it.
The contrast dyes and the freezing I had both went through my system with no apparent affect on my IC. I think I might have noticed a slight increase in frequency for a day or two after, but it was nothing severe. My symptoms didn't spike, and the frequency could have been anything from eating something that didn't quite work for me, or the time in my cycle.
I can understand your apprehension though, and don't at all wish to undermine it. In your case, I'm assuming the contrast material has to be inserted somewhere that can allow them to examine your brain? I don't know whether the injection site makes any difference to its affect on the body? Certainly though, they have done this to other before you... I hope it's at least a bit encouraging that my IC didn't flare...
To respond to the radiation issue: MRI is a different technology than an x-ray or CT to my understanding. It does not use ionizing radiation, but magnetic radio waves. It's much more akin to an ultrasound, also not harmful. A CT scan does expose the body to high doses of radiation, but this will not have the same effect.
Hope this helps. My thoughts and prayers are with you. I have a friend with MS -- she was diagnosed when we were 21, and I remember how scary it was for her. Please let me know if there's anything more I can do.
still trying to hang in
PinkLady,
Wow, thank you from my heart for your lovely message... when you said "your struggles have been numerous and unfair," you perfectly expressed my feelings on the last 3 years I've endured.
Thankfully I'm finally having improvement in my arms though far from normal; after I improve more, next step is Elavil weaning, so no cause for celebration yet b/c that could incense everything (incl my bladder that's been great for long time, and anxiety which was part of the reason I went on it in the first place!). Matia said it could be nothing, or minimal, or could majorly upset some things or everything, she just doesn't know. Needless to say, very scary. But Matia believes I won't get all well in arms/legs until I'm off it.
Unfortunately I'm still not on ICAMA much right now, it's not best for me personally...my life is upside down, just need to focus on 100% positive to get through. (Please no one get scared/discouraged by my situation; apparently my body and situation are very unique, and remember Matia did get my bladder basically 100% in over a year. And I think stress is a huge trigger so please everyone do whatever you can to lessen yours b/c it's not worth it.)
Thank you again for reaching out as you did. And thank you for the MRI info, but I decided soon after I couldn't risk it and there wasn't compelling evidence to me that it was MS/anything else except this crazy IC disease.
still trying to hang in
PinkLady,
Wow, thank you from my heart for your lovely message... when you said "your struggles have been numerous and unfair," you perfectly expressed my feelings on the last 3 years I've endured.
Thankfully I'm finally having improvement in my arms though far from normal; after I improve more, next step is Elavil weaning, so no cause for celebration yet b/c that could incense everything (incl my bladder that's been great for long time, and anxiety which was part of the reason I went on it in the first place!). Matia said it could be nothing, or minimal, or could majorly upset some things or everything, she just doesn't know. Needless to say, very scary. But Matia believes I won't get all well in arms/legs until I'm off it.
Unfortunately I'm still not on ICAMA much right now, it's not best for me personally...my life is upside down, just need to focus on 100% positive to get through. (Please no one get scared/discouraged by my situation; apparently my body and situation are very unique, and remember Matia did get my bladder basically 100% in over a year. And I think stress is a huge trigger so please everyone do whatever you can to lessen yours b/c it's not worth it.)
Thank you again for reaching out as you did. And thank you for the MRI info, but I decided soon after I couldn't risk it and there wasn't compelling evidence to me that it was MS/anything else except this crazy IC disease.
(((((((hug))))))))) Wishing
(((((((hug)))))))))
Wishing you continued improvement- you really need a break.