Question about treatment without MRI info.

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Question about treatment without MRI info.

Postby orphansparrow » Mon Dec 12, 2016 7:49 pm

Hi there,

Following the advice from a regular member here, my husband (who has advanced MS - as seen on his two MRIs, but very mild symptoms - some optic neurisis and balance issues) - has decided not to get his follow-up, 6 month MRI. There are concerns about the toxicity of the contrast dye involved in the MRIs, and we figured better safe than sorry. Maybe?

Anyway, we are wondering about how to decide how to move forward without any updates from an MRI. He has been on 44mg of Rebif since the week he was diagnosed, 6 months ago, and they want to see what affect, if any, this has had. His symptoms are the same as they were 6 months ago, but the Rebif makes him feel really lethargic and generally bad. His best days are Sundays and Mondays because he doesn't take Rebif the days before those.

SO - I'm wondering about those of you who don't get regular MRIs. How do you make decisions about diet/drugs/etc without the MRI information?

Thank you. :)
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Re: Question about treatment without MRI info.

Postby Scott1 » Mon Dec 12, 2016 8:09 pm

Hi,

An MRI is a picture. It is not a treatment. It is not a measure of disability. The primary purpose is to aid in diagnosis and provide an objective measure that symptoms are not caused by swelling, clots or indicators of other problems. How you feel, how well you move, how tired you are or even how demyelination manifests itself as an outward symptom is completely unaffected by whether you have one or not. Treat it as guide for the neurologist to help him to determine how symptoms may be explained. For example, damage on certain vertebrae can can show up as changes in say, how your fingers may feel or operate.

Symptoms of MS may not even arise from the damage that can be observed on a picture of the brain or spine. There are as many neurons in your gut as there are in your brain. They don't do MRI's of the gut as a rule.

Just treat it as a picture and try to deal with each symptom as it's own little problem. A change in presentation between two MRI's separated in time might tell you something but I'm not sure what it practically means for a meaningful response.

Regards,
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Re: Question about treatment without MRI info.

Postby jimmylegs » Tue Dec 13, 2016 12:05 pm

heya :) personally mri info has never guided my actions. it just shows a swiss cheese-y brain that i'm lucky still works at all haha
available evidence points to my having done a lot of that damage with elevated ammonia levels before i figured out my low uric acid / stupid-vegan zinc deficiency / possible hyperammonemia connection.
never had any ammonia bloodwork sadly, but yes to past serum UA and Zn tests, plus being so brain dead before ID-ing Zn deficiency followed by the brain shaping right up after fixing Zn deficiency (and also watching UA automatically normalize with it).
i think those two results pretty much clinch it anyway. the link between low zinc and high ammonia is established in the literature (sry no time to track down orig study, here's me yapping about it tho)
post166081.html?hilit=ammonia#p166081
post166346.html?hilit=ammonia#p166346
bet my ammonia levels were easily 10x normal range.
wonder if that brain damage would still look the same on an up to date mri? wouldn't make a difference to how i go about my day to day however :D
for me, blood tests had always conveyed far more useful information than mri. as i think you know, no meds here.
the closest i got was taking the baseline liver enzyme tests but then never followed through on the pending rebif idea.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Question about treatment without MRI info.

Postby tzootsi » Wed Dec 14, 2016 2:43 pm

here's my 2 cents (I'm not a doctor) - my wife has what seems to be a very slow moving case of PPMS. She had about 4 MRI's about 6-7 years ago. They were always the same - no active lesions. Her neuro wanted to give her copaxone. She didn't want it, and hasn't had an MRI since - what's the point of getting them? In the past year or so, she's been taking biotin, and now is also on mega vitamin D with Dr. Holick in Boston.. She has had no progression in a year, and actually seems a little better lately. In short, I think MRI's have minimal value after the first few, especially if you are SPMS or PPMS. That being said, perhaps the danger of the contrast dye is also overblown.
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Re: Question about treatment without MRI info.

Postby euphoniaa » Sat Jan 14, 2017 8:02 am

orphansparrow wrote:Hi there,

Following the advice from a regular member here, my husband (who has advanced MS - as seen on his two MRIs, but very mild symptoms - some optic neurisis and balance issues) - has decided not to get his follow-up, 6 month MRI. There are concerns about the toxicity of the contrast dye involved in the MRIs, and we figured better safe than sorry. Maybe?



Hi orphansparrow. I'm a little late weighing in here, but I wanted to point out that the only reason for the contrast dye is that it lights up "active" lesions. Brain lesions should show up whether you use the contrast or not. If he gets MRIs as close together as 6 months, the changes would be obvious.

In my case, my very first brain & C-spine MRIs were done only without the contrast dye, and showed a brain FULL of MS lesions, none on the spine. Subsequent MRIs WITH contrast -- including one the very next year -- showed basically the same lesions. I still get regular MRIs with/without contrast now and then (for 13 years), and NONE have ever shown any of the lesions as active, although they're still there.

My MS seemed way too far along at diagnosis (almost age 53) to start powerful drugs, since I had obviously had it for many years (at least 30 yrs), and I was feeling super healthy. By then I had come up with a great regular routine of healthy eating (NO vitamins/supplements, although my levels are fine), daily exercise, plenty of sleep, humor, etc., to deal with my wayward body.

I know I've been VERY fortunate with my MS (not so much with the other general problems of aging I've been slammed with... :sad: ), but you can't go wrong with optimizing your general health along with whatever other treatments you decide. Good luck to you! :smile:
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Question about treatment without MRI info.

Postby oreo » Sat Jan 14, 2017 7:29 pm

I believe the basic purpose of these multiple MRI's is primarily to enrich the service providers and the referring doc's.

When my family doctor suspected I might have MS he sent me for an MRI and referred me to a neuro.
The radiologists looked at the MRI and said yes, MS.
The neuro looked at the MRI and did a clinical work-up and said yes to MS.

I see him once a year for an MS check-up. I have been on Rebif (22) since my diagnosis.
I have not had another MRI as they tell me there is no point unless I experience a sudden onset of new & significant symptoms.

Oh - that first (and only) MRI was in 2004. 12 years ago.
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Re: Question about treatment without MRI info.

Postby centenarian100 » Wed Jan 18, 2017 4:04 pm

If you are concerned about the gadolinium, you can always ask to have the scan without contrast. This would be somewhat lower in yield but would still be useful if it revealed stability or multiple new lesions

I think what tzootsi is saying makes sense-if you are older and have long standing progressive multiple sclerosis, you are less likely to have Gad+ lesions, so the benefit of giving gadolinium is much less and possibly outweighed by the risk of brain dye accumulation. On the other hand, there is some evidence that b cell depleting agents such as rituximab/ocrelizumab may be effective in patients with progressive multiple sclerosis with Gd+ lesions, so if you would consider these treatments, you may want to bite the bullet and get the scan. Obviously, if you are not on treatment and do not desire it, there is really no point to do MRI scans except for assistance in diagnosis.

For someone with RRMS on rebif, the only point of doing the scan would be if you would consider changing to a more aggressive agent if you had asymptomatic brain lesions accumulation.

Rebif is not particularly effective, so this probably makes sense for a young person with RRMS early in the diagnosis.
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Re: Question about treatment without MRI info.

Postby orphansparrow » Wed Nov 15, 2017 8:24 pm

Whoa! Thanks everyone. I'm way way late, but somehow I never saw these replies. He has since had 2 more MRIs with contrast per the advice of his new doctor, and still no active lesions. He quit Rebif, as it made him feel awful, and felt so much better off of it, but now his doctor wants him to try Ocrevus and it's a hard decision for us. So many sides to consider. I am very thankful for you all!!
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