Round lesions?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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BravelittleKings87
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Round lesions?

Post by BravelittleKings87 » Mon Feb 11, 2019 4:33 pm

Good evening!

Firstly, thank you for this site! I have absolutely no one to talk to about any of this. This has been like a safe place to go and read/connect. I am 31 F and I have had symptoms for the last year, and looking back to my “excellent” memory, January 2017 is the first time I remember taking a hot bath and feeling sick, having the pins and needles in my legs and It bothered me enough for me to get out of the tub. I remember feeling quite dizzy, and needing to lie down for a few minutes. I have not been officially diagnosed, I went to my doctor and said something isn’t right. We did blood tests, checked my Vitamin D levels, liver, ekg, autoimmune testing. My vitamin D was 10.9, she said it should be much higher, and then put me on a supplement. I’m on 50k once a week with little improvements. She ordered a nerve conduction and the results were small fiber neuropathy and with my symptoms worsening my GP ordered a MRI in late November, lesions were found and referral for a neurologist with a “suspicion of MS” was sent (via what my doctor said.) The neurologist that I saw was..a tad off in my opinion and well he didn’t listen to anything I said. Luckily one of my symptoms was active and he diagnosed it as Erythromelgia and also noticed I had tremors as well. Then after my evaluation he said that my past medical records and his evaluation that I had Sjögrens, with secondary erythromelgia, and small fiber neuropathy. My question comes from a comment he made, and I’m hoping that someone on here can from experience or knowledge help me understand alittle better. I addressed my MRI, I said what about the lesions? He said MS lesions are oblong and mine were round and therefore they are from Migranes. I went to a osteopathic doctor today who went over my records and she pretty much said the last neurologist was a uneducated person and that it’s definitely sounding and appears to be multiple sclerosis and she’s referring me to the multiple sclerosis center a few hours from me. I was just wondering if anyone else had round lesions and MS? Any feedback is greatly appreciated!!

Findings: 2 round 1mm focal hyperintensities in the peri ventricular white matter of the right frontal lobe.

Discussion: The white matter lesions found in this patient are non specific they are consistent with areas of gliosis related to chronic ischemic change or demyelination.

Conclusion: Infrequent foci of gliosis in the right cerebral hemisphere.

The MRI of the brain w/o contrast.

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jimmylegs
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Re: Round lesions?

Post by jimmylegs » Mon Feb 11, 2019 4:53 pm

hi and welcome :) sorry to hear you've been going through a tough time.

four questions:
1. may i ask what were the units of measurement for that vit D result?
2. also, whether the 50K per week is vit d2 or vit d3?
3. were any other essential nutrient tests run?
4. can we assume no essential nutrient cofactors were prescribed to go with the supplemental d3?

i'm no diagnostician and i can't even comment knowledgeably about ms diagnostics. that said when i was diagnosed (early 2006) you had to have a lot more than 2 lesions, more like 10. sorry i can't provide any insight re the shape of migraine vs ms lesions.

regardless of whatever diagnosis comes down, in the meantime your symptoms and d3 result are certainly a major heads up. worth paying close attention, following up, and taking action.

others will be able to provide more feedback i am sure!
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!

BravelittleKings87
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Re: Round lesions?

Post by BravelittleKings87 » Mon Feb 11, 2019 5:49 pm

Thank you for the reply Jimmylegs.

To answer your questions.
1. The Vitamin D was ng/ml reference range was 30-100.
2. The prescription is for Vitamins D2
3. I had to go back over my patient chart and didn’t see any testing for nutrient testing. That’s something I will definitely ask to have done if wasn’t.
4. As far as I know we didn’t do that testing, so I will contact the doctor tomorrow and try to get new labs, or see if the testing was done and the results if they were.

I’m hoping the lack of multiple lesions is a good sign! Thanks again for your help!

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Scott1
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Re: Round lesions?

Post by Scott1 » Mon Feb 11, 2019 9:21 pm

Hi,

It's probably worthwhile changing neurologists. (Just ask for a second opinion).

The MRI should have been done with contrast anyway. Not all lesions relate to MS so I would conclude nothing yet.

Was your spine scanned or just the brain?

Regards,

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NHE
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Re: Round lesions?

Post by NHE » Mon Feb 11, 2019 11:03 pm

Yes, MS lesions can be round and also very dynamic. They can come and go without a change in clinical symptoms. Here is a time lapse MRI depicting the change in lesions in an asymptomatic patient over the course of a year.

http://www.msdiscovery.org/news/news_sy ... -meets-eye

You can also look at some of the case studies posted at the following page.

https://radiopaedia.org/search?lang=us& ... cope=cases

ElliotB
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Re: Round lesions?

Post by ElliotB » Tue Feb 12, 2019 5:15 am

Welcome to TIMS, sorry to read you are not feeling well.

At this point, you should only see a neurologist that specializes in MS, so the MS clinic sounds like a good place to go. MS can be difficult to diagnose.


"I’m on 50k once a week with little improvements."

Vitamin D is not an instant miracle cure but rather works best over time. It is also important to get your D level where you want it to be and to maintain it at that level. D3 maybe a better choice overall than D2. But basically there is no difference between vitamin D2 and D3 for raising blood levels of the vitamin, but apparently D3 is superior for sustaining those levels. Vitamin D2 is produced by plants, and Vitamin D3 is the one made by your skin when you get enough sunlight. Whether you take D2 or D3 probably makes little difference, and what is most important is that you get your Vitamin D level up to your target level. And the amount you take to achieve the level you want (did your doctor say what level you should be at?) can vary depending on many circumstances. I suggest blood work every three months to monitor your progress. If you are lower or higher than the level you want to be at, adjust your intake accordingly and retest in 3 months.

One thing I do suggest is spreading the dosage out during the entire week (taking smaller amounts on a daily basis rather than take one large dose). I do this with all my supplements.

FWIW, many people take much, much higher doses than what you are currently taking. I take your weekly dosage on a daily basis and have been for years. Again, what is most important is NOT how much you take but if you are at and maintain your target level. I am NOT suggesting you change your dose at this time. Monitor your progress every 3 months with blood work and adjust as needed based. It took me about a year to get in the range I wanted and I still have to adjust my dosage a bit on occasion based on my blood work.
Last edited by ElliotB on Tue Feb 12, 2019 7:35 am, edited 1 time in total.

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jimmylegs
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Re: Round lesions?

Post by jimmylegs » Tue Feb 12, 2019 6:18 am

hi again and thanks for your updates :)

re 10 ng/ml it could have been worse (ie if it had been 10 nmol/l!!)
follow up question. had the doc mentioned a target level, or was 'much higher' all that was mentioned?
here's some related recent discussion (about vit d and more) which may interest you:
viewtopic.php?p=256452#p256452

a vit d3 supplement is the more efficient and effective choice for raising serum vit d3 levels.
if you can't achieve or maintain a target seurm 25(OH)vitamin d3 level without megadosing, there may be an absorption/utilization issue; cofactors will more than likely be worth looking into.

last time i had to work on my d3 status (a year ago), i needed to get from 20 to 50. i had been neglecting things for a few years, and it was starting to show. so to start, i took 50K IU of vitamin d3 for 10 days, with lots of cofactors included in the regimen. then i retested and my level came back at 36. so, i did another round of 50K d3 for 10 days, hoping that would get me to 50. instead my next follow-up level came back at 67! so then i called it quits on the high dosing and went back to a normal daily maintenance dose. this way i don't have to go crazy with cofactors as well, to protect against the side effects of long term vit d high dosing. the body has mechanisms to protect against d3 overdose from sun. not the case for oral supplement forms. safety studies are fixated on one d3 side effect and to date don't even know what they might be missing.

aside from the electrolytes and ferritin tests which are part of routine bloodwork, serum vitamin b12 is a very mainstream test for patients who need to rule out issues that mimic ms.

one nutrient with particular relevance to vit d3 status is still under debate in the literature and therefore is still in the process of working its way into mainstream practice - serum magnesium.

i think everything mentioned here is covered in a bit more detail in the forum post linked above. more info to consider :)

i'm glad the low lesion count is encouraging, but please don't get complacent because there are few lesions so far - definitely take good care of yourself and get the help you need to follow up on those symptoms!
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!

BravelittleKings87
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Re: Round lesions?

Post by BravelittleKings87 » Tue Feb 12, 2019 8:39 am

ElliotB wrote:
Tue Feb 12, 2019 5:15 am
Welcome to TIMS, sorry to read you are not feeling well.

At this point, you should only see a neurologist that specializes in MS, so the MS clinic sounds like a good place to go. MS can be difficult to diagnose.


"I’m on 50k once a week with little improvements."

Vitamin D is not an instant miracle cure but rather works best over time. It is also important to get your D level where you want it to be and to maintain it at that level. D3 maybe a better choice overall than D2. But basically there is no difference between vitamin D2 and D3 for raising blood levels of the vitamin, but apparently D3 is superior for sustaining those levels. Vitamin D2 is produced by plants, and Vitamin D3 is the one made by your skin when you get enough sunlight. Whether you take D2 or D3 probably makes little difference, and what is most important is that you get your Vitamin D level up to your target level. And the amount you take to achieve the level you want (did your doctor say what level you should be at?) can vary depending on many circumstances. I suggest blood work every three months to monitor your progress. If you are lower or higher than the level you want to be at, adjust your intake accordingly and retest in 3 months.

One thing I do suggest is spreading the dosage out during the entire week (taking smaller amounts on a daily basis rather than take one large dose). I do this with all my supplements.

FWIW, many people take much, much higher doses than what you are currently taking. I take your weekly dosage on a daily basis and have been for years. Again, what is most important is NOT how much you take but if you are at and maintain your target level. I am NOT suggesting you change your dose at this time. Monitor your progress every 3 months with blood work and adjust as needed based. It took me about a year to get in the range I wanted and I still have to adjust my dosage a bit on occasion based on my blood work.
Thank you for your response! I think when my doctor first saw me she didn’t think much about it. She said 50k and in a few months you should start feeling better. We retested 6 months later and she was all well...we’ll keep you on it and see. Almost a year later and she is seeming to take it alittle more serious. She didn’t specify how much I’d gone up, she just stated I had and that I was still deficient. Looking back, I definitely should of asked a lot more questions. I can’t say that I even had the questions to ask then...I’ve been on it for 9 1/2 months now. I agree with the dosaging. I think on a more frequent basis and figuring out if there’s a metabolic or other underlying issue. I’ve made an appointment with a nutritionist and I’ll admit I’m late to the party on changing my diet. I am already plant based due to GERD, but I’m a very lazy vegetarian. My weakness is Italian food. Reading articles and literature, gluten is far from a friend of someone with a potential inflammation issue. I again appreciate the response and will definitely look into additional testing and getting some questions together.

BravelittleKings87
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Re: Round lesions?

Post by BravelittleKings87 » Tue Feb 12, 2019 8:49 am

Scott1 wrote:
Mon Feb 11, 2019 9:21 pm
Hi,

It's probably worthwhile changing neurologists. (Just ask for a second opinion).

The MRI should have been done with contrast anyway. Not all lesions relate to MS so I would conclude nothing yet.

Was your spine scanned or just the brain?

Regards,

Thank you Scott1 for the response. Originally they were going to do with contrast. The tech said if there’s any abnormalities the contrast shows a clearer picture. Then we did the first part, then she came in and was like your free to go. We don’t need to do contrast, I walked out like a boss. lol 😂 The very next day I get a unknown number call and it’s my doctor telling me I have brain lesions. I was caught off guard. I have two small children that are special needs. My oldest is 8 and autistic and he’s very smart, limited verbally but he understands and the last thing I wanted was a full breakdown in front of them, so I didn’t ask many questions then either. Anyway, the MRI was just of the brain.

BravelittleKings87
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Re: Round lesions?

Post by BravelittleKings87 » Tue Feb 12, 2019 9:18 am

NHE wrote:
Mon Feb 11, 2019 11:03 pm
Yes, MS lesions can be round and also very dynamic. They can come and go without a change in clinical symptoms. Here is a time lapse MRI depicting the change in lesions in an asymptomatic patient over the course of a year.

http://www.msdiscovery.org/news/news_sy ... -meets-eye

You can also look at some of the case studies posted at the following page.

https://radiopaedia.org/search?lang=us& ... cope=cases
Thank you very much for these links! ☺️

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jimmylegs
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Re: Round lesions?

Post by jimmylegs » Tue Feb 12, 2019 10:19 am

Thank you for your response! I think when my doctor first saw me she didn’t think much about it. ... Almost a year later and she is seeming to take it a little more serious. ... I was still deficient. ... I’ve been on it for 9 1/2 months now. ... I’ve made an appointment with a nutritionist and ... I’m a very lazy vegetarian. My weakness is Italian food. Reading articles and literature, gluten is far from a friend of someone with a potential inflammation issue. I again appreciate the response and will definitely look into additional testing and getting some questions together.
hi again - based on those notes, if at all poss, get personal copies of your lab work for your own records.
consider a high potency multi vit-min (eg a product for active women). mainstream dietary nutrient intake recommendations are designed for *maintenance* in average sized healthy omnivores. if you deviate in any way from that target demographic, you could need higher intakes. the specific essential nutrition challenges for vegetarians can be found in the fine print!

fyi the issue with gluten x vegetarianism is that gluten creates a higher demand for specific nutrients that are particularly low in vegetarian diets. zinc in particular. more about that another time.

it will likely be well worth your while to step up the diligence in the vegetarian department. i have boatloads of xp there so you're in luck if you're interested. i remember placing all my faith in my doctor - so so wrong.

excellent news that you've made an appointment with a nutritionist. i hope you're in a jurisdiction where that term means more than it does where i live. here, dietitians are held to a higher standard - anyone can call themselves a nutritionist. i know that's not the case everywhere though.

i used to have NASTY GERD. in my case i had an overly relaxed lower oesophageal sphincter from doing my supplements wrong. i corrected my routine and it cleared up nicely. i've since wondered if a spastic LES from mineral deficit can lead to the same symptoms. i don't have research at my fingertips to back up that notion, but could probably find some if i had time to search.

for now, to sum up:

1. consider getting your hands on lab results - there might be an online patient system you can access.

2. could be smart to double check to see if you have results for serum b12. as a vegetarian, this number should be on your file, especially if ms is a possibility. it doesn't matter if the result is 'normal'. it's in your best interests to know specifics, whether or not your levels have been low-normal or borderline rather than outright deficient.

3. if you are not already in the habit, consider adding a high quality, high potency vit/min to your daily regimen. made from natural food sources, if you can find. also, a three a day product if you can find one.

4. evaluate daily dietary sources and intakes of magnesium, with a starting target of 400 mg per day.
epsom salts baths can help too.
top up with a high quality supplement if and as needed.
consider magnesium glycinate in preference to plain magnesium oxide. mag g is less laxative than mag o, and better absorbed into tissue. the product i currently use is a 200 mg magnesium glycinate powder cap. there are 100mg options on the market as well.

5. AFTER you have the multi and the mag in place, you can use your d2 to boost your serum d3 status.
here is an important note (key advice from a pharmacist) re combinations:
  • take 50% of daily supplemental mag WITH the vit D
  • take the other 50% of daily supplemental mag WELL AWAY FROM the vit D
.
6. consider a 10 day therapeutic vitamin D boost (as opposed to maintenance intake levels) using your 50K IU vit d2 product. taking 50K IU/d for just 10 days is a standard protocol which for average joe should boost serum levels by 20 ng/ml (would work better using d3, but don't waste what you've got on hand).
MAKE SURE you combine the high dose vit d2 intake DEFINITELY with some of the magnesium and OPTIONALLY with some of the multi.

eg for 10 days

am: 1st of 3-a-day multi
midmorning: 1st of 2 mag
lunch: 50K IU vit d2, 2nd of 2 mag, 2nd of 3-a-day multi
pm: 3rd of 3-a-day multi

7. after 10 days, switch out the 50K IU daily vit d2 for 2000 IU daily vit d3 (gelcaps or similar) until you can get updated test results.
depending on the follow-up result, another 10 day x 50K IU/d could be needed. if not, you could transition to a lower daily
maintenance dose over the longer term.
please note though - i've previously overdone d3 via just 4000 IU per day long term, because i was not combining it properly with magnesium. others here on the forum have had the same problem with even less daily vit d3, again over the long term and without proper attention to cofactors. the magnesium combo and timing is key.

hope all that helps!!!
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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NHE
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Re: Round lesions?

Post by NHE » Tue Feb 12, 2019 6:21 pm

ElliotB wrote:
Tue Feb 12, 2019 5:15 am
Vitamin D is not an instant miracle cure but rather works best over time. It is also important to get your D level where you want it to be and to maintain it at that level. D3 maybe a better choice overall than D2. But basically there is no difference between vitamin D2 and D3 for raising blood levels of the vitamin, but apparently D3 is superior for sustaining those levels. Vitamin D2 is produced by plants, and Vitamin D3 is the one made by your skin when you get enough sunlight. Whether you take D2 or D3 probably makes little difference, and what is most important is that you get your Vitamin D level up to your target level.
That may not be correct. The following research shows that D2 is less effective than D3 and even lowers D3 levels.

Here are two relevant papers on D3. The first compares D3 to D2. D2 can lower your D3 levels. The second showed a 32% increase in absorption of D3 by taking it with a meal that includes fat. In light of this second paper, I've switched to taking my D3 with dinner.


Vitamin D2 is much less effective than vitamin D3 in humans.
J Clin Endocrinol Metab. 2004 Nov;89(11):5387-91.
  • Vitamins D(2) and D(3) are generally considered to be equivalent in humans. Nevertheless, physicians commonly report equivocal responses to seemingly large doses of the only high-dose calciferol (vitamin D(2)) available in the U.S. market. The relative potencies of vitamins D(2) and D(3) were evaluated by administering single doses of 50,000 IU of the respective calciferols to 20 healthy male volunteers, following the time course of serum vitamin D and 25-hydroxyvitamin D (25OHD) over a period of 28 d and measuring the area under the curve of the rise in 25OHD above baseline. The two calciferols produced similar rises in serum concentration of the administered vitamin, indicating equivalent absorption. Both produced similar initial rises in serum 25OHD over the first 3 d, but 25OHD continued to rise in the D(3)-treated subjects, peaking at 14 d, whereas serum 25OHD fell rapidly in the D(2)-treated subjects and was not different from baseline at 14 d. Area under the curve (AUC) to d 28 was 60.2 ng.d/ml (150.5 nmol.d/liter) for vitamin D(2) and 204.7 (511.8) for vitamin D(3) (P < 0.002). Calculated AUC(infinity) indicated an even greater differential, with the relative potencies for D(3):D(2) being 9.5:1. Vitamin D(2) potency is less than one third that of vitamin D(3). Physicians resorting to use of vitamin D(2) should be aware of its markedly lower potency and shorter duration of action relative to vitamin D(3).
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Dietary fat increases vitamin D-3 absorption.
J Acad Nutr Diet. 2015 Feb;115(2):225-30.
  • BACKGROUND: The plasma 25-hydroxyvitamin D response to supplementation with vitamin D varies widely, but vitamin D absorption differences based on diet composition is poorly understood.

    OBJECTIVES: We tested the hypotheses that absorption of vitamin D-3 is greater when the supplement is taken with a meal containing fat than with a fat-free meal and that absorption is greater when the fat in the meal has a higher monounsaturated-to-polyunsaturated fatty acid ratio (MUFA:PUFA).

    DESIGN: Open, three-group, single-dose vitamin D-3 comparative absorption experiment.

    PARTICIPANTS/SETTING: Our 1-day study was conducted in 50 healthy older men and women who were randomly assigned to one of three meal groups: fat-free meal, and a meal with 30% of calories as fat with a low (1:4) and one with a high (4:1) MUFA:PUFA. After a 12-hour fast, all subjects took a single 50,000 IU vitamin D-3 supplement with their test breakfast meal.

    MAIN OUTCOME MEASURES: Plasma vitamin D-3 was measured by liquid chromatography-mass spectrometry before and 10, 12 (the expected peak), and 14 hours after the dose.

    STATISTICAL ANALYSES PERFORMED: Means were compared with two-tailed t tests for independent samples. Group differences in vitamin D-3 absorption across the measurement time points were examined by analysis of variance with the repeated measures subcommand of the general linear models procedure.

    RESULTS: The mean peak (12-hour) plasma vitamin D-3 level after the dose was 32% (95% CI 11% to 52%) greater in subjects consuming fat-containing compared with fat-free meals (P=0.003). Absorption did not differ significantly at any time point in the high and low MUFA and PUFA groups.

    CONCLUSIONS: The presence of fat in a meal with which a vitamin D-3 supplement is taken significantly enhances absorption of the supplement, but the MUFA:PUFA of the fat in that meal does not influence its absorption.

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