Brain and Spine MRI with lesions radio & neuro disagree

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Suzemom
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Brain and Spine MRI with lesions radio & neuro disagree

Post by Suzemom » Mon Dec 31, 2018 9:34 am

Happy New Year. I had a major episode that I thought was migraine related on 9/6/18. Went to ER and had a stroke workup done, they did an MRI of my brain. I’m 43 and relatively healthy but for psoriasis,arthritis and hemiplegic migraines. I’ve had migraines before many times, my type can mimic a stroke or rarely cause a stroke. This episode lasted well beyond migraine length to 12 days where I had trouble speaking, balance issues, numbness, etc. My Brain MRI showed elevated white matter disease for my age radiologist notes demyelination and possible MS. No stroke. Cervical and thoracic MRI’s were ordered after I decided to get a second opinion in Boston. Cervical was clear and Thoracic showed multiple subtle lesions and MS was noted on report. These were all done by two separate radiologists. I had all necessary blood work to rule out other things. I had a negative nerve conduction test and emg (Which further points to ms). Since September I have lost sensation in my feet and a few toes. I get an all day pulsing/cramping in one calf and a twitching in the other leg. Numbness in hands, sleeping with clenched hands, very difficult time running (something I’ve done for 20 years). Feet and legs feel as if heavy and one lifts more than the other. BUT with all of this, even with her physical exam finding sensation loss in my extremities, she has doubts about both MRI results. For the brain she says the white spots are not really exactly where lesions typically form. She said the thoracic mri MIGHT be artifacts, but to be sure they are giving me a new series of brain and spine mri in mid January with contrast. I’m scared of the contrast and might opt out of that. But this one will be done on a 3T machine so I’m assuming it’ll be more clear. Overall, very frustrating. Having all of these new problems and no answers. Every test I get more confused! QUESTION: have any of you had conflicting mri reports ? Where radiologist says one thing and neuro disputes it more than once? This neuro specializes in MS. She’s not sure if I do or do not have me as of yet. I guess I’m having anxiety right now . I know this process can be brutal

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NHE
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by NHE » Mon Dec 31, 2018 10:34 am

Did you get vitamin B12 checked? If so, what were the results (usually in pg/mL)? Did you get any other B12 related tests done? These usually include red blood cell folate, homocysteine and methylmalonic acid (MMA). B12 deficiency can mimic MS including lesions seen on MRI.

What kind of diet do you eat, omnivore or vegetarian?

Suzemom
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by Suzemom » Mon Dec 31, 2018 10:41 am

Yes. All were normal. I don’t have results w me today but I went over them w neuro and they’re all normal. I eat a mixed diet. I eat some meat, eggs, fish and tons of veggies, some healthy grains. I’m not overweight and I exercise regularly. I’m really curious to know if anyone has had conflicting radiology vs neurologist opinions repeatedly

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NHE
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by NHE » Mon Dec 31, 2018 10:56 am

Suzemom wrote:Yes. All were normal. I don’t have results w me today but I went over them w neuro and they’re all normal.
With B12, it's important to know the actual test result. You want B12 to be at least 500 pg/mL. However, some laboratory test ranges go down all the way into the deficiency area. The lowest I've seen still called normal was at 185 pg/mL. 8O

Do you take any supplements? For example, green tea can inhibit folate. If folate gets too low, then spent B12 is no longer recycled back to the active form and this can cause a B12 deficiency over time.

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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by Suzemom » Mon Dec 31, 2018 11:07 am

Not the question I’m asking, but thanks for your input. I’m really dying to get my original question answered as I can’t find much about this in my research.

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NHE
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by NHE » Mon Dec 31, 2018 11:17 am

Suzemom wrote:Not the question I’m asking, but thanks for your input. I’m really dying to get my original question answered as I can’t find much about this in my research.
Yes, I saw your question.
Suzemom wrote:QUESTION: have any of you had conflicting mri reports ? Where radiologist says one thing and neuro disputes it more than once?
This goes without saying. The diagnostic process for MS can get messy. It's a process of elimination of other conditions that can cause MS-like symptoms. Hence my inquiry into your B12 status because being told that you're "normal" isn't good enough with respect to B12.

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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by jimmylegs » Mon Dec 31, 2018 11:21 am

welcome to the forum, sm. sorry to hear you have been having a frustrating time.
my only approximately similar xp would be my own awareness of the difference btw the data used to dx, vs the actual data i knew was in my files.

i agree that it's important to know test result specifics even when within the normal range. 'normal' is just bell curve for a generally unhealthy society. for any measure it covers 95% of the population - and overall a lot more than the other 5% of us are in less than perfect health.

when i was diagnosed, the piece they glossed over was an earlier undetectable b12 result. it was the single time i had tested without supplements beforehand. when diagnosed i was supplementing like crazy, no washout before lab work, and level was up to 300 pmol/l (ie 70 pmol/l below the minimum 500 pg/ml aka 370 pmol/l described by NHE above).

your own situation doesn't raise immediate red flags for b12, but there are a few other possibilities worth looking at. they won't resolve the difficulties you're facing on the dx front, but they can help you determine if your status is as close as possible to that of an optimally healthy control, vs 'normal' which includes the sick, vs an ms patient (generally low normal).

others may chime in with the specific commiseration you are looking for!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Suzemom
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by Suzemom » Mon Dec 31, 2018 12:23 pm

I don’t take supplements, if that helps. I’m wondering who has more clout in reading and interpreting MRI’s in general, Radiologists or Neurologists. Is it a gray area? I guess I just have to wait for my next round of images.

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jimmylegs
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by jimmylegs » Mon Dec 31, 2018 12:46 pm

i can empathize with the frustration of uncertainty. everything happened really quickly for me in relative terms, and still every wait was agony. i remember wanting answers and certainty where there was none. i felt urgency, when there really was none of that either. end of the day, i'd spent years getting to that place, and i wasn't going to get out overnight.

the problem from where i sit personally, is with maintaining status quo until all the diagnostic tick boxes can be checked and all experts agree on the dx. for some, this devolution takes years. i don't expect this to comfort you but fwiw i'm well over a decade post dx and am still way more interested in looking after myself than parsing the latest imaging results! :S

definitely continue the quest for answers but consider as well whether there is room to improve on the health front. psoriasis, migraine and arthritis suggest the answer is yes. could be worth a closer look at dietary nutrient density in relation to physical activity levels, habitual uv exposure, that kind of thing. complicated, but can be worthwhile.

i hope you get the answers you are looking for on the imaging front. :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Suzemom
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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by Suzemom » Mon Dec 31, 2018 1:19 pm

Thanks. I really appreciate the feelings aspect of your experience. When I look back, my problems escalated after I had my last child. I think my body had enough! Out of nowhere I was getting speech altering, vision altering migraines and psoriasis. My oldest son is autistic and I’m raising him with my husband who is the stepdad. We are tired and stressed, so even though I’m not sick or unhealthy by appearance, my body is shutting down. I always held myself up above everyone in terms of “oh I never get sick.” I skipped years of physicals because I was a tough person and felt good. One possible issue as well, playing into this is low ferritin levels. Iron levels as far as hemoglobin are good but my iron stores are a 7. NOT NORMAL. This is probably due to years of nursing, pregnancy, childbirth, and irregular periods. But, it doesn’t cover all of the ms symptoms I’ve had. Docs just shrug their shoulders at my low ferritin level. Tired literally and figuratively. Thanks for the help and guidance. This is the first time I’ve reached out.

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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by Snoopy » Mon Dec 31, 2018 1:31 pm

Hi Suzemom.
Suzemom wrote: QUESTION: have any of you had conflicting mri reports ? Where radiologist says one thing and neuro disputes it more than once?
No, I have not had that experience. MS can be a difficult disease to diagnose and most Neurologists nowadays are very cautious about diagnosing. Many things can mimic MS and all other conditions need to be ruled out. There is no single test, by it's self, that can give a definitive diagnosis of MS and it is not uncommon for someone to be diagnosed with this disease and down the road the patient is undiagnosed...hence the caution in giving a diagnosis.

Do you happen to take a biologic medication for your psoriasis or arthritis? If so, please check medication side effects, many of these medications can cause the possibility of MS and/or cause symptoms that resemble MS.
I’m scared of the contrast and might opt out of that


I would like to encourage you to have the MRIs done with and without contrast. If you have had recent blood work done to check kidney function and all is fine you should be fine to do contrast. Contrast is flushed out through the Urinary tract (kidneys/bladder). Drink water before having the MRI, not too much for obvious reasons and after your done with all of the MRIs drink a lot of water and you will flush the contrast out fairly quickly. I have found if I don't drink a lot of water afterwards my bladder/urethra feels irritated.

A MRI without contrast will show the same thing with contrast, the difference is any lesions that are currently active (inflammation) will "light up" with contrast. If nothing lights up then whatever lesions you have are considered old. The diagnostic criteria for diagnosing MS requires dissemination in time and space:

~ Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND

~ Find evidence that the damage occurred at different points in time AND

If your next MRI includes contrast and you have lesions that light up with contrast and some that don't that would indicate new and old lesions which might satisfy time and space ( if lesions are due to MS).

Hope that helped :-)

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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by Suzemom » Mon Dec 31, 2018 1:53 pm

Hi snoopy. Thanks. Good advice. I take no meds, just Advil for pain and some zofran for nausea at times. But no biologics. I’m kind of anxious about doctors, procedures and meds. The less the better because I don’t want to pollute my body. It’s why I’m scared of contrast and what they don’t know about it’s long term affects. Some brand names have been banned in Europe. But if the benefit outweighs the risk I may just do it. I’d rather not do any of this but here I am, a stubborn person, reaching out and doing it. Thanks.

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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by ElliotB » Mon Dec 31, 2018 2:05 pm

"Where radiologist says one thing and neuro disputes it more than once"

You need to see a neurologist that specializes in MS and have him or her review your MRI.

I had one 'regular' neurologist review my original MRI and said I was fine, and went for a 2nd opinion on the advise of a family member to a MS specialist (neurologist) who was able to make the correct diagnosis.

MRIs are not always easy to read.

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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by Suzemom » Mon Dec 31, 2018 2:10 pm

Hi ElliotB. She’s an MS specialist in Boston. She’s confused but searching. They had tested me for ALS too which was scary as hell. Thankfully nothing. If MRI’s are uneventful, I’ll be passed on to a “neuromuscular specialist” neurologist. The basic neurologist I saw first brushed me off altogether and gave me wrong advice about treatment for my hereditary migraines so I went up to Boston to this woman. I hope it just turns out to be nothing. I am having so many symptoms though, that I’m not sure how it will turn out. Thanks.

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Re: Brain and Spine MRI with lesions radio & neuro disagree

Post by jimmylegs » Mon Dec 31, 2018 2:34 pm

Thanks. I really appreciate the feelings aspect of your experience. When I look back, my problems escalated after I had my last child. I think my body had enough! Out of nowhere I was getting speech altering, vision altering migraines and psoriasis. My oldest son is autistic and I’m raising him with my husband who is the stepdad. We are tired and stressed, so even though I’m not sick or unhealthy by appearance, my body is shutting down. I always held myself up above everyone in terms of “oh I never get sick.” I skipped years of physicals because I was a tough person and felt good. One possible issue as well, playing into this is low ferritin levels. Iron levels as far as hemoglobin are good but my iron stores are a 7. NOT NORMAL. This is probably due to years of nursing, pregnancy, childbirth, and irregular periods. But, it doesn’t cover all of the ms symptoms I’ve had. Docs just shrug their shoulders at my low ferritin level. Tired literally and figuratively. Thanks for the help and guidance. This is the first time I’ve reached out.
no problem. this is all important info. pregnancy most definitely takes a toll on your body's resources. something i may have mentioned few times in the past ;) https://bit.ly/2CIyCRF

going forward, for my 2c at least, docs should not ignore low iron stores (is that 7 a serum ferritin measurement?) - especially if you are dealing with fatigue and other obvious signs and symptoms. if you decide to work on correction, please consider evaluating status quo diet first, then maybe having some additional nutrient level testing done. either way, you'll have more info to help you decide whether supplementation might be appropriate. it's not a good idea to jump right in at the deep end, especially with iron supplements for example, because the essential metals all interact with and affect each other. if you just add iron yes that level goes up, but others will definitely come down. if already on the low side to begin with, that's a risk you might not want to take without more information.

have you ever been given or asked for referral to a preventive pro? eg registered dietitian? they don't work with supplements in my arm's length xp, but could help you with pointers if you provide a three day diet diary. there are all kinds of templates online if you decide to do some journaling independently :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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