Possible MS

[Megs32]

I had gone in November to get MRI and they found lesion's in my brain and demeylation also changes in the matter. My primary doctor didn't even want to address my MRI until I made him at the end of my appointment. He said when he saw the results he thought oh fuck. He said he'd diagnosed two others within the last year and that's why they were automatically referring me to a neurologist. My first appointment is this friday. It was the earliest I could get in. In the meantime I've been a nervous wreck. Any advice anyone could give would be great. I don't know what to expect or even ask.

[NHE]

I had gone in November to get MRI and they found lesion's in my brain and demeylation also changes in the matter. My primary doctor didn't even want to address my MRI until I made him at the end of my appointment. He said when he saw the results he thought oh fuck. He said he'd diagnosed two others within the last year and that's why they were automatically referring me to a neurologist. My first appointment is this friday. It was the earliest I could get in. In the meantime I've been a nervous wreck. Any advice anyone could give would be great. I don't know what to expect or even ask.

Many things can cause lesions. Some types of lesions are associated with MS, some are not. A neurologist will look at the MRI and other test results together to come to a diagnosis. What symptoms do you have?

[jimmylegs]

welcome megs. definitely curious re symptoms, day to day lifestyle/routine, personal and family background wrt chronic illness etc. could be some useful health pursuits available. actionable stuff, to run in parallel to the diagnostic track with its associated wait times and stress!

[Megs32]

Well I am a diabetic so my Dr ruled out anything that could be associated with that. They did an echo on me to see if my heart had to do with my dizziness and almost passing out. I've been more clumsy than normal and have more tingling in my arms and legs, which I've never had. More and more I have days where a sadness settles in and I have no idea why. I am tired all the time and have to really try to push myself to do anything. My Dr tested my cortisol levels and thyroid and they are healthy limits. I eat healthy and exercise everyday by walking and I work.

[jimmylegs]

good start on details.

followup questions:

have you ever been referred for any nutritional testing assoc w chronic illness including diabetes? or basics re fatigue, eg serum ferritin?

can you describe eating healthy in more detail? eg what's a typical recipe (ie specific ingredients not general menu items) for a work week breakfast, lunch and dinner?
how does this vary on a weekend day?
has your diet been evaluated by a dietitian for adherence to RDAs?

what's the daily exercise routine like?

how's the job in terms of contribution to overall stress levels?

the more detail available, the easier it will be to tease out any potential action items.

[Megs32]

No I have not had any nutritional testing done. I have no food allergies. Have not had any testing for serum ferritin, I don't even know what that is. My breakfast is usually fruits consistent of berries like blueberries, raspberries, bananas. Lunch is either chicken salad with grilled chicken or turkey. Dinner is chicken or turkey in some form along with veggies such as corn, broccoli, cauliflower, peas, beans etc. Since I found out that I am a diabetic this past year I have cut out carbs as much as I can.

My job is low key, I work for a local hardware store 4 days a week and they are 5 hour shifts and go to school at night for medical assistanting. I don't tolerate the cold very well due to frostbite many years ago so my walks only consists of a couple miles when it's nicer usually 3 to 5 miles and in the summer I usually go hiking. I have a German shepherd that's a little over a year old that requires lots of exercise and it's her that keeps me moving to be honest.

[Megs32]

Ok, my levels for iron are perfect, my Dr had been thinking of taking me off the diabetic med because I have lowered my a1c1 down to a point where it's in normal range the last few times it's been tested.

[jimmylegs]

ok more good info. have your docs ordered any kind of routine bloodwork and if so, can you get access to your results? eg via an online system or a hard copy from the doc's office?

serum ferritin is likely to be an aspect of the most routine bloodwork. it's a measure of iron status. good to know where you stand. (i see you posted perfect iron levels - specifics? my target range based on the literature is 80-100 ng/ml - no higher)

iron is one of the most common usual suspects where fatigue is concerned. also implicated in fatigue. a necessary cofactor for all kinds of things. worth looking into if you're not consuming dense 'heme' animal iron sources, or combining 'non-heme' veg iron sources like kidney beans or 1c.+ servings of cooked spinach, with high vit C foods like broccoli, brussels sprouts, bell pepper and strawberries (but interestingly not blueberries or raspberries - i'm a berry fan too!).

a serum magnesium level could be useful in your case as well. important in both ms and diabetes. only in the upper half of typical normal ranges, do you find people completely free of magnesium deficit symptoms. sometimes, healthy individuals have serum mag levels outside the top end of the normal range - but heir status is still far below toxicity levels. it's an issue with the way the maxes and mins are set up at the labs, and the way low to mid-range levels often fail to raise any red flags for the pros doing the interpretation. this same issue reocccurs with many essential nutrients. it's a dynamic that lands us in a reactive disease management paradigm.

if you're interested, assuming you already have serum ferritin on file somewhere, the handful of other serum tests which could be informative for both ms and diabetes include:

serum vitamin b12, serum vitamin d3, serum magnesium, serum zinc, serum copper, and nice to have but not need to have, serum uric acid. there are a few others but this handful are an excellent start in terms of at least ruling out an issue with any of the nutritional 'usual suspects'.

work, school and activity levels sound decent. nothing too draining on your essential nutrient status!
awesome work on your a1c1.

i almost forgot to ask about seafood and nuts/seeds in your routine?

[Megs32]

I'm a big fan of nuts and seeds I do incorporate those into my diet as well as bell peppers and I usually have spinach with my salads. As far as I know all my levels in my blood work have been within normal ranges. My vitamins d was a little low so my Dr just had me start a supplement for that I also don't eat fish but take a supplement for that also. Trust me my Dr is pretty thorough about testing and I know he did a magnisum and everything else that would explain the fatigue.

[jimmylegs]

ok sounds great. eg 1/4 c sunflower seeds daily provides 90% of vit E requirement (another important one for ms patients)

any details on the vit d regimen? did the doc prescribe d2 or d3? dose taken? daily or weekly - or monthly? which vit d cofactors, if any, did the doc advise be taken as part of your vit d regimen?

vit d taken without cofactors can be poorly absorbed/utilized, resulting in a poor dose response. this prompts some to megadose, without making sure there's not a missing piece of the cofactor puzzle at the root of the problem.

d3 taken without cofactors can also deplete those cofactor nutrients. key among these are d3's impacts on magnesium status. the vit d3 mag dynamic is geting out there in the literature but i've not seen it leap the gap into mainstream practice quite yet. if your doc is on top of that aspect, i'm impressed! i'm also curious in that case, which is your doc's recommended way to achieve appropriate cofactor intake. eg for mag has he recommended a particular daily target for dietary mgs of magnesium? have you been provided with any suggested supplemental form, dose, or timing info in relation to the d3 intake? i'll be interested to hear your doc's approach in that dept

to emphasize, low to mid normal zinc and mag levels are red flags where chronic diseases are concerned. if you have specifics on those, could be worthwhile. to rule any issues out if nothing else. and to ensure your body has and keeps the right tools on board to help it make the best possible use of any d3 thrown in its direction

[Megs32]

Well I don't know about cofactors but I take 2000 of vitamin d once daily. I eat raw almonds and spinach and other mg rich food in a daily basis. My levels have always been on the higher end of good.Any advice to go into this appointment?

[jimmylegs]

sounds like a decent start diet wise!

still interested in details re 'high end of normal'. some places, the top of the normal range is pretty low. eg 1.5-2.5 mg/dL, whereas i'd call the target range more like 2.3-2.7 mg/dL. i recently saw a study where the patients in the best condition had levels 2.5 mg/dL and higher. completely outside the top end of 'normal'. fascinating stuff.

here's a great mag food chart. their ratings are by essential nutrient delivered per calorie.
nb: the dark leafy greens serving sizes are after a short boil, to enhance leaf density per cup and also to manage antinutrient characteristics - esp in swiss chard which gets a 3 min boil vs spinach's 1 min boil.

http://www.whfoods.com/genpage.php?tnam ... #foodchart

when i had life threatening symptoms i had been taking 4000 IU of d3 for some time, with a relatively low dose cal mag zinc supplement daily. it was a pharmacist who recognized the problem. he said to always take some magnesium at the same time as any d3, but then to also always take more at a separate time so that it's not dominated by d3 interactions.

he didn't specify a supplemental form. i went with magnesium oxide. mistake. these days i've settled on the more soluble and therefore more readily absorbed magnesium glycinate. glycine is another recommended input for pwms so it all hung together.

the most basic safeguard i can think of would be to find i high quality multivit/min for active individuals, ensuring it provides a decent amount of magnesium, and add that to your d3 intake.

a nutrient dense diet being the most important foundation for any regimen of course.

and as for being a nervous wreck, there also happen to be handy magnesium products on the market which can help address just that, eg:
https://naturalcalm.ca/ (citrate, decent but not tip top absorption wise)
http://www.trymagpop.ca/ (glycinate - havent tried the drink version personally)

really makes a difference.

if your nutritional bloodwork is typical of an ms patient, a really hard look at some of those 'normal' nutrient levels will be in your best interests! not just mag, but the others listed above as well.

as for appointments, just get copies of everything you can. there will be a series of tests to go through if the mri does in fact point to ms. you likely know there's no single test for which all ms patients and no other patients test positive. it's a process. they'll walk you through it.

[jimmylegs]

for your reference if they run your serum b12, from your results look for high normal. eg min 500 pg/ml or 370 pmolL. personally i aim for 500 pmol/l to stay out of any gray area.

my serum b12 was 300 pmol/L when diagnosed. i'd been chronically low/deficient in b12 for ages beforehand. it was ruled out as a factor in my case due to that 300 result. i'd been frantically supplementing, however, and during the dx process was terrified to do a washout and run a clean test.

Vitamin B12, demyelination, remyelination and repair in multiple sclerosis.
https://www.ncbi.nlm.nih.gov/pubmed/15896807
Abstract
Multiple Sclerosis (MS) and vitamin B12 deficiency share common inflammatory and neurodegenerative pathophysiological characteristics. Due to similarities in the clinical presentations and MRI findings, the differential diagnosis between vitamin B12 deficiency and MS may be difficult. Additionally, low or decreased levels of vitamin B12 have been demonstrated in MS patients. Moreover, recent studies suggest that vitamin B12, in addition to its known role as a co-factor in myelin formation, has important immunomodulatory and neurotrophic effects. These observations raise the questions of possible causal relationship between the two disorders, and suggest further studies of the need to close monitoring of vitamin B12 levels as well as the potential requirement for supplementation of vitamin B12 alone or in combination with the immunotherapies for MS patients.

for d3, with cofactor status properly in line, aim for min 100 - better 125 nmol/l once you're sure it's safe to do so..

http://www.thisisms.com/forum/general-d ... ml#p248455

it's a good idea to exclude suboptimal nutrient status across the board. make sure levels are not in the low normal range similar to ms patients, but the high normal range similar to healthy controls. and that certain nutrient ratios are in line, vs individual levels alone. vit d3 status is a particular risk factor for nurses if memory serves...

Environmental Risk Factors for Multiple Sclerosis. Part II: Noninfectious Factors
http://bit.ly/2sFSYG8
"The only published longitudinal studies on diet and MS risk are those based on two large cohorts of US nurses.29 Assessment of vitamin D intake among women in these cohorts was based on comprehensive and previously validated semiquantitative food frequency questionnaires administered every 4 years during the follow-up.30,31 The information on current use, brand, and dosage of multivitamin supplements was collected on each biennial questionnaire. The validity of vitamin D intake was assessed by comparison with the plasma concentrations of 25(OH)D among 323 healthy study participants.32 For plasma collected in winter, which is more likely to reflect dietary intake, the mean 25(OH)D was 39.8nmol/L among women in the bottom quintile of vitamin D intake and 69.8nmol/L among women in the top quintile."

compare serum levels associated with least risk of ms in this cohort:

Serum 25-Hydroxyvitamin D Levels and Risk of Multiple Sclerosis
http://jamanetwork.com/journals/jama/fullarticle/204651
Prospective, nested case-control study among more than 7 million US military personnel who have serum samples stored in the Department of Defense Serum Repository. Multiple sclerosis cases were identified through Army and Navy physical disability databases for 1992 through 2004, and diagnoses were confirmed by medical record review. Each case (n = 257) was matched to 2 controls by age, sex, race/ethnicity, and dates of blood collection. Vitamin D status was estimated by averaging 25-hydroxyvitamin D levels of 2 or more serum samples collected before the date of initial multiple sclerosis symptoms.
...
Only the OR for the highest quintile, corresponding to 25-hydroxyvitamin D levels higher than 99.1 nmol/L, was significantly different from 1.00 (OR, 0.38; 95% confidence interval, 0.19-0.75; P = .006). The inverse relation with multiple sclerosis risk was particularly strong for 25-hydroxyvitamin D levels measured before age 20 years. Among blacks and Hispanics (109 cases, 218 controls), who had lower 25-hydroxyvitamin D levels than whites, no significant associations between vitamin D and multiple sclerosis risk were found."

so personally, i like to aim for 125-150 nmol/L, but if i was starting out in the 40 to 70 nmol/L range i'd be making sure i had all my d3 cofactors in good shape as well. aim for 100 nmol/l while ensuring other levels are good. then i'd consider it safe to go higher. i've paid the price for pushing vit d3 levels up *without* adequate attention to cofactor status, and it wasn't fun. at all. so that's my 2c for the time being!

if you get serum zinc, aim for high teens in umol/l. serum copper also high teens, but a bit lower than zinc is idea.

serum uric acid, aim for healthy controls niche 290-300 umol/l (compare ms average 194, 'normal' 140-360 umol/l)

and so on.

[NHE]

Well I am a diabetic so my Dr ruled out anything that could be associated with that. They did an echo on me to see if my heart had to do with my dizziness and almost passing out. I've been more clumsy than normal and have more tingling in my arms and legs, which I've never had. More and more I have days where a sadness settles in and I have no idea why. I am tired all the time and have to really try to push myself to do anything. My Dr tested my cortisol levels and thyroid and they are healthy limits. I eat healthy and exercise everyday by walking and I work.

A diagnosis of MS is a diagnosis of elimination. That is, ruling out other conditions which can cause the same symptoms. A B12 deficiency can cause many of the symptoms that you've mentioned and should be tested for. A complete B12 analysis includes tests for homocysteine, methylmalonic acid and red blood cell folate in addition to B12. I would not accept an MS diagnosis without getting these tests done to rule out a B12 deficiency. You may be interested in reading the following topic for more information. http://www.thisisms.com/forum/natural-a ... 24857.html Note that it's important to realize that many laboratory ranges for B12 have lower end values tagged as normal, but which actually represent a deficiency. As Jimmylegs mentioned, your really want serum B12 to be between 500-1000 pg/mL. Sometimes the laboratory ranges can drop as low as 180 pg/mL. This is nonsense bordering on malpractice.

[Megs32]

The last time my B12 was tested my results were 717. My folate was 12.7 that was this past October.