Has anyone with SFN had an MRI with contrast?
 

I have to have a brain MRI with and without contrast on Friday. I have heard several people say this causes extreme pain with their neuropathy. It is probably from the metal they inject you with for the contrast. This is bothering me so much I am considering calling it off. Has anyone had experiences with MRIs? Good or bad?

Just one ...
 

I had an MRI of my brain with and without contrast last week and felt no pain or after effects. My PN is pretty severe with balance and walking problems, numb feet, painful legs but symptoms well controlled with Neurontin and NSAIDS.

BTW: Results of MRI showed "normal" for my age.

I also have severe, severe neuropathy - Im on 9 meds to control it and I am still almost bed-ridden. I had a MRI with contrast of my entire spine and brain. The metal injection did not exacerbate the pain at all. Good luck.

Welbutrin warning!!!!
 

I was perusing your old posts and noticed that wellbutrin was on the list. I was taking it years ago to try to quit smoking and after realizing that it was not helping me I quit the wellbutrin. I had heard that suicidal thoughts had occured in teenagers from dropping wellbutrin but I was in my fifties. Anyway my warning to you is taper off the stuff when or if you quit it. Or at least be forewarned. If I hadn't known about the teenager warning, I would have been in trouble. I have never felt so utterly useless before or since. At one point I also was almost bed-ridden and had to use Hydrocodone 10-325 for about 8 months and then was able to got off it. I no longer take any pain meds at all. Three years in. Good Luck, Ken in Texas.

Hi Onebeed,

I had an MRI of my entire spine and brain. We started with brain and with and without gadolinium contrast. I had a terrible allergic reaction, both my eyes went completely red and were immensely itchy as soon as the gadolinium was in me. I kept my cool and let them finish their scan, since I didn't want to mess with that. I was taken to emergency at the same hospital and was given Benadryl and steroids IV to bring down the swelling. It helped immediately and one eye had some more swelling that went down by nighttime. I then went home. That same day or the next (I can't remember now) both my arms from elbow to hand went almost completely numb. It happened suddenly and was not part of the SFN symptoms I had. I went to emergency and they couldn't find anything. The next day the numbness was completely gone. The rest of the scans were done without contrast, given this reaction, even though they were originally to be done with and without.

The brain scan was clean. I would do it again, since they suspected MS. I didn't even know about SFN back then. I read quite a bit on gadolinium before the scan. It's toxic, and there have been cases of renal failure, but mostly in patients with renal issues to begin with. The presumption is that the kidneys will filter it out through the urine, but I read about cases of patients who years later still had elevated serum levels, if I recall correctly. But I believe these reports were anecdotal.

Would I get another one if I really needed it? Likely yes. But considering, I didn't have the worst reaction. It went away in a day or two, though it was intense and scary. It's going to load your body with a toxin, and that's not what we want to be going with SFN, especially if the cause is some sort of toxicity. I would say it's a risk, and no one can tell you what will happen, and that if it were me, I'd likely weigh the options. With nerve issues, some would say a scan of the brain with contrast is necessary, and I'm glad I got one. I hope this helps. And good luck whatever you decide.

The contrast they usually use is gadolinium.

I haven't taken Wellbutrin for a couple of years. I was scared off all antidepressants when my general practitioner at the time said that Paxil can cause the electric-shock sensations I was having.

Thanks for your reply. These are the kinds of things that scare me, mostly because if an allergic reaction happens to me I am not going to let them give me steroids because I have Lyme disease and steroids suppress the immune system. That would let the Lyme take over and I am trying to fight it. They are testing me for MS but I already know I have Lyme so I am weighing the options and wondering if I really need the MRI. Lyme is so often misdiagnosed as MS. I don't even think I would take MS meds anyway because I think they suppress the immune system also. I am not really sure why the neurologist thinks I need the MRI.

If you are having ANY concerns about having an MRI with and without contrast, I think the first thing you need to get answered is the question you stated in your post.

WHY is the test being ordered?

There are various reasons and various degrees of necessity behind a physician ordering any tests.

Is the doctor covering all bases? Is the doctor covering his butt? Does the doctor suspect something in particular and is looking to confirm or refute it? Is the doctor at a loss and is trying to find something?

Is the test essential? Are there other ways to find a proper diagnosis? What are the advantages and disadvantages of the test? The risks?

Some tests are absolutely necessary for a patient, some are not. Some are protocol for presenting with certain symptoms.

If you would feel better knowing the underlying reasons your physician has ordered your testing, do not hesitate to ask. After all, the patient is suppose to be FULLY informed, not just given a statement that you need to have a specific test or procedure.

Some patients WANT as much information as one can obtain from their physician and others prefer not to know. Physicians will not generally go into more detail than the patient requests, so if you want to know, please ask.

Well, for what it's worth, those who have allergic reactions are definitely in the minority. The steroid dosage was also quite low and a one time thing, so I imagine it wore off quite quickly.

DavidHC - I want to thank you for your insight on the toxic nature of the gadolinium. I did some research myself and decided I did not want the MRI with contrast. I have an MTHFR mutation that makes it hard for me to detox metals. I had a test done that showed I have a large amount of lead in my body that I have been trying to chelate. I do not want to add to that burden. So I called my doctor and asked I if I can just have the MRI without contrast and they said that would be fine. Problem solved!

Hopeless - the doctor ordered the MRI to see if I have MS. I would like to know if I have MS or not even if I am not going to do anything to treat it. It is getting very difficult for me to go to work every day and I am considering getting a medical retirement and I think the MS diagnosis would help.

Once again, you guys are awesome. I can always count on this forum for great insight and answers. DavidHC you probably saved me from a lot of misery.

Hi Onebeed,

I'm really glad to hear you found my comment helpful and that you've come to a decision you're happy with, but I'm worried my comments may have discouraged you from getting the MRI with contrast, and that was not my intention at all. I just wanted to report my own experience and research, including my worries going into it. I'm no expert but I'm surprised your doctor was okay doing a brain MRI without contrast when checking for MS, since the little I know indicates that contrast is very helpful when looking for lesions. But again I'm no expert, and if you and your doctor are happy with the decision, then I'm glad.

If only they could create solution that are not toxic for such important purposes. Medication is not the only source of toxicity in medicine today.

DavidHC - from what I understand from reading the posts on the MS web site, they can still see lesions without contrast. The contrast just helps them identify new lesions.

I've been tested for MS 2x now. Both times contrast was used. I hate it; you can taste it in the back of your mouth. I also the pleasure of having the radiology tech piercing through my vein with the contrast injection. Teaching hospital rookie. :mad:

Sounds good, Onebeed. You and your physician know best. What my physician told me, when I raised issues with using the gadolinium, is that it's intended to make the images more visible/clearer when looking for lesions, and that it's part of the protocol. So I hesitantly acquiesced. As I mentioned, after my allergic reaction, they did the rest of the scans without contrast.

Best of luck with the scans. I hope they prove useful. :)

Onebeed, as far as I remember, the test for MS is much more accurate with gadolinuim. The gadolinium might help to find defects in the Blood Brain Barrier (BBB). However, it is might be possible to detect some of leasions and inflammation without it.

David, I know there is some research for MRI methods to replace the gadolinium.

Thanks, Stillhoping. I'm glad to hear that. I hope it's into non-toxic substitutes.

There are some folks that think that gad. can cause SFN.

I had six MRIs with contrast prior to the idiopathic SFN starting. After it started, I had two more. The last two, I noticed at night that the symptoms were worse at the time within a day after.

Am searching about this now.

Paxil
 

Well, I just got the results of my heavy metals test. The last time I had a MRI scan with contrast was Spring 2014. It's almost 2 years later and my Gadolinium is way outside the reference range. So it doesn't seem to exit the body very fast.

Sorry to hear this. :( I was happy to read that you were doing much better with the burning but this is unfortunate news. Do you think/know if your kidney function is somehow compromised? The stories I had read where people recorded high numbers were not those who had any known kidney issues, but worth checking out perhaps. Maybe we just don't get rid of it the way they say/think, since it's not a standard blood test. I don't know.

Did you test high in other metals? I can't recall if you did both serum and urine. I'm going to ask my GP to run the test for me. Not sure if they can do the same tests here, including for gadolinium. And it does seem like there's a special protocol first there. What do you do now? Will R-Lipoic Acid be useful? Either way, good luck. :)

I'm not sure about my kidney function, but they are going to run a full CBC panel on me to get a basline.

I did test high in other heavy metals. I did a provoked urine challenge. I'll make a separate post and so those who are interested can easily read about my test results.

Just wanted to add one comment here regarding Gadolinium contrast: When they inject it, it is bound to a chelating agent that prevents it from being absorbed. Then, (in theory) it is just removed and flushed out through your kidneys and into your urine. But, if you don't get it flushed out quick enough, it separates from the chelating agent, and absorbs into your body. And, once its there, its pretty much there for good.

The one thing that they are supposed to tell you (and in my case they did not) - is that it is important to drink a lot of fluids so that the contrast gets flushed out before it breaks down.

I was not told this, and I did not hydrate after the procedure. Although I had other symptoms before the MRI with contrast - I did not have the pain in my feet until shortly after. Of course I will never know for sure, but I do strongly suspect that the gadolinium really worsened my symptoms.