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glovedo
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New here

Post by glovedo »

Hey I am new here and pretty sure I will be sticking around. I was rather suddenly told Wednesday (8/31) that I more than likely have MS. I went to see a neurological ophthalmologist for some new vision problems including the difficulty focusing after shifting my eyes and double vision while trying to focus. After focusing I had 20/15 vision. I then told him about an episode a few months previous with numbness on the right side of my body and left side of my face. He immediately sent me for an MRI of the brain. They sent him the scans and he called at the imaging center and confirmed that what he was looking at looked a lot like MS. Having never really known what MS was and the only people I have known that had it did not have a good time with it, I flipped out. My job requires that I stay poised in the face of the most extreme stressors and stay composed no matter what chaos comes my way. But when I heard that I was reduced to a snotty sobbing mess (way out of character for me). He called the neurologist and she worked me in that day to talk to me and kinda ease my concerns. She said it looks exactly like MS and she is confident that is what it will be but she can't officially give the diagnosis til all the tests are back.

I guess I am here looking (against the neurologists advice) for more information on what it is, what I can expect, see some other peoples experiences so I can kind of know what to expect for the rest of my life. I am very much a fixer and an action oriented person, so this sitting around is not going very well. I have to go get the spinal tap and MRI of the spine on the 9th and won't have the results back until the 26th. Also, I am keeping this close to the vest until I know more about what is going on but I just needed to tell someone my story more for me than anyone else's benefit (if that makes sense)... Lucky you guys :)
ElliotB
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Re: New here

Post by ElliotB »

Hi and welcome to TIMS. Symptoms vary from individual to individual but stress is known to make matters worse. You definitely want to eliminate ALL stresses from your life.

While there is no known cure, there are many, many things you can do for yourself to help feel better and do well overall. There is a wealth of knowledge on this site and it is certainly worth taking the time to explore the many discussions here. There are many good books you can read and lots of info on the web. Know that you are among friends here!
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lyndacarol
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Re: New here

Post by lyndacarol »

glovedo wrote:I was rather suddenly told Wednesday (8/31) that I more than likely have MS. I went to see a neurological ophthalmologist for some new vision problems including the difficulty focusing after shifting my eyes and double vision while trying to focus. After focusing I had 20/15 vision. I then told him about an episode a few months previous with numbness on the right side of my body and left side of my face. He immediately sent me for an MRI of the brain. They sent him the scans and he called at the imaging center and confirmed that what he was looking at looked a lot like MS. Having never really known what MS was and the only people I have known that had it did not have a good time with it, I flipped out. My job requires that I stay poised in the face of the most extreme stressors and stay composed no matter what chaos comes my way. But when I heard that I was reduced to a snotty sobbing mess (way out of character for me). He called the neurologist and she worked me in that day to talk to me and kinda ease my concerns. She said it looks exactly like MS and she is confident that is what it will be but she can't officially give the diagnosis til all the tests are back.

I guess I am here looking (against the neurologists advice) for more information on what it is, what I can expect, see some other peoples experiences so I can kind of know what to expect for the rest of my life. I am very much a fixer and an action oriented person, so this sitting around is not going very well. I have to go get the spinal tap and MRI of the spine on the 9th and won't have the results back until the 26th. Also, I am keeping this close to the vest until I know more about what is going on but I just needed to tell someone my story more for me than anyone else's benefit (if that makes sense)... Lucky you guys :)
Welcome to ThisIsMS, glovedo.

In my opinion (I have no medical background), doctors should order a vitamin D test (the "25-hydroxy D" test) when a patient appears with unexplained neurological symptoms, such as yours. Vitamin D deficiency is very common – it is estimated that over 1/2 of the American population is deficient. And since vitamin D is required by every cell in the body, a deficiency can affect any system.

If you have not had this simple blood test, please call your GP (or even the neurologist) and request this inexpensive test (usually about $70). Request your own copy of the test results so that you have the actual numbers. I was tested in January and my level was only 24 ng/mL, which is quite low. In MS patients, the vitamin D level is often low.
ElliotB
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Re: New here

Post by ElliotB »

"You definitely want to eliminate ALL stresses from your life."

Just wanted to add that if your job is stressful, it is probably in your best short and long term interest to change it. Frankly, at some point, you may not have a choice - sooner is better than later when it comes to your overall health.
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NHE
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Re: New here

Post by NHE »

Legitimate massage therapy does wonders for relieving stress. Note that you might have to try a couple of different people before you find a masseuse that works well for you. They're definitely not all the same.
glovedo
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Re: New here

Post by glovedo »

Thank you all for your responses and I was afraid the stress would have something to do with it from reading through posts last night. I would like to do anything and everything possible before quitting my job because I am deeply passionate about it and love what I do. I appreciate you all for putting it on my radar as a possibility but I hope it never gets to that. And the vitamin D deficiency is highly likely! I am not a huge fan of milk and work the night shift, so I am kind of a vampire when it comes to the sun. The next time I meet with my neurologist I will definitely mention it. Do you think the doctor would prescribe weekly massages and would insurance cover it, cause if so, that is a treatment I definitely wouldn't mind. (sorry if my attempt at humor is offensive to anyone... coping mechanism)
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NHE
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Re: New here

Post by NHE »

glovedo wrote:Thank you all for your responses and I was afraid the stress would have something to do with it from reading through posts last night. I would like to do anything and everything possible before quitting my job because I am deeply passionate about it and love what I do. I appreciate you all for putting it on my radar as a possibility but I hope it never gets to that. And the vitamin D deficiency is highly likely! I am not a huge fan of milk and work the night shift, so I am kind of a vampire when it comes to the sun. The next time I meet with my neurologist I will definitely mention it. Do you think the doctor would prescribe weekly massages and would insurance cover it, cause if so, that is a treatment I definitely wouldn't mind. (sorry if my attempt at humor is offensive to anyone... coping mechanism)
In addition to the importance of vitamin D3, there is also vitamin B12 which should not be overlooked as a B12 deficiency can cause many neurological symptoms that mimic MS including lesions on both the brain and spinal cord seen via MRI. Indeed, one of the only ways to distinguish B12 deficiency from MS is to test for B12 deficiency which is fortunately fairly easy to do. Anyone experiencing neurological symptoms will want their B12 to be at 600 pg/mL or greater. You may wish to read the following discussion topic for more information. http://www.thisisms.com/forum/natural-a ... 24857.html
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lyndacarol
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Re: New here

Post by lyndacarol »

glovedo wrote:And the vitamin D deficiency is highly likely! I am not a huge fan of milk and work the night shift, so I am kind of a vampire when it comes to the sun. The next time I meet with my neurologist I will definitely mention it.
Given your situation (night shift and inadequate dietary sources), I urge you again to ask your GP or neurologist for the 25-hydroxy vitamin D blood test (most insurance will cover it). And ask for your own copy of the test results!

Although milk and other foods are fortified with vitamin D, there are not enough dietary sources to satisfy the body's needs for vitamin D. (In addition, milk is fortified with the D2 form, which is much less effective than vitamin D3.)

Vitamin D Deficiency in Adults: When to Test and How to Treat. (2010)
Kurt A Kennel, Matthew T Drake, Daniel L Hurley
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912737/

Abstract
Recent evidence for the nonskeletal effects of vitamin D, coupled with recognition that vitamin D deficiency is common, has revived interest in this hormone. Vitamin D is produced by skin exposed to ultraviolet B radiation or obtained from dietary sources, including supplements. Persons commonly at risk for vitamin D deficiency include those with inadequate sun exposure, limited oral intake, or impaired intestinal absorption. Vitamin D adequacy is best determined by measurement of the 25-hydroxyvitamin D concentration in the blood. Average daily vitamin D intake in the population at large and current dietary reference intake values are often inadequate to maintain optimal vitamin D levels. Clinicians may recommend supplementation but be unsure how to choose the optimal dose and type of vitamin D and how to use testing to monitor therapy. This review outlines strategies to prevent, diagnose, and treat vitamin D deficiency in adults.


Vitamin D3 Is More Potent than Vitamin D2 in Humans (2010)
JCEM (Journal of Clinical Endocrinology & Metabolism)
http://press.endocrine.org/doi/abs/10.1210/jc.2010-2230

"Conclusion:D3 is approximately 87% more potent in raising and maintaining serum 25(OH)D concentrations and produces 2- to 3-fold greater storage of vitamin D than does equimolar D2. For neither was there evidence of sequestration in fat, as had been postulated for doses in this range. Given its greater potency and lower cost, D3 should be the preferred treatment option when correcting vitamin D deficiency."


Even living in Hawaii wouldn't guarantee an adequate vitamin D level:

Severe vitamin D deficiency in Hawai'i: a case report.
(2006)
M Bornemann
http://www.ncbi.nlm.nih.gov/pubmed/16602611

Severe vitamin D deficiency would appear unlikely to occur in Hawai'i, which has abundant year-round sun exposure. This case report of a woman with no obvious risk factors for vitamin D deficiency who was found to have severe vitamin D deficiency and coexisting primary hyperparathyroidism should alert health care providers to be more aware of vitamin D deficiency in Hawai'i.


The California-based group, GrassrootsHealth (www.GrassrootsHealth.net) is a good source for vitamin D information.
glovedo
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Re: New here

Post by glovedo »

lyndacarol wrote:Given your situation (night shift and inadequate dietary sources), I urge you again to ask your GP or neurologist for the 25-hydroxy vitamin D blood test (most insurance will cover it). And ask for your own copy of the test results!
Wow! My neurologist continues to impress. I got a letter in the good ole snail mail Monday saying that some of my blood tests are back and it showed that my vitamin D levels were at 12 (insufficient being 30 and deficient being 20). Also included was a prescription for vitamin D3 50,000 units which I will take once a week for 12 weeks, then reevaluate for maintenance. Looks like you guys were right and she was one step ahead of us all. :) Thanks again for all yall's input.
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lyndacarol
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Re: New here

Post by lyndacarol »

glovedo wrote:
lyndacarol wrote:Given your situation (night shift and inadequate dietary sources), I urge you again to ask your GP or neurologist for the 25-hydroxy vitamin D blood test (most insurance will cover it). And ask for your own copy of the test results!
Wow! My neurologist continues to impress. I got a letter in the good ole snail mail Monday saying that some of my blood tests are back and it showed that my vitamin D levels were at 12 (insufficient being 30 and deficient being 20). Also included was a prescription for vitamin D3 50,000 units which I will take once a week for 12 weeks, then reevaluate for maintenance. Looks like you guys were right and she was one step ahead of us all. :) Thanks again for all yall's input.
It is good that you have discovered that your vitamin D level is deficient and needs to be raised. Please be aware that this "storage form" of vitamin D (25-hydroxy D) in your blood uses magnesium in order to change into the "active form" that is needed throughout your body.

When you take high-dose D supplementation (prescribed by your doctor), you will also need to take in more magnesium (either by eating more magnesium-rich foods, such as spinach, Swiss chard, kale, etc. – jimmylegs can give you a more complete list of sources – or by taking magnesium supplements).

Most of the magnesium in the body is in the bones and tissues; you don't want Vit D to rob these sources. (Magnesium deficiency is common in the US population – 80% according to magnesium expert Carolyn Dean, MD, ND, author of the book, The Magnesium Miracle. A post by THX1138, http://www.thisisms.com/forum/natural-a ... ml#p231485; General info, http://www.fireitupwithcj.com/the-ultim ... magnesium/ and 31-minute Dean video,

If you use Mg supplements, choose the form of magnesium which is absorbed best. Magnesium oxide is NOT absorbed well; the oxide form seems to give a laxative effect easily. Magnesium glycinate is preferred by many; recently, magnesium threonate has been in the spotlight:

http://www.thisisms.com/forum/natural-a ... 28183.html
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jimmylegs
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Post by jimmylegs »

hey there. not sure if it is captured in your links above LC but i think carolyn dean connected the societal d3 problem itself to low mag. certainly those who have higher sun exposure but low mag, also have lower d3 than expected. that's documented in a few different studies. a fave read re magnesium: http://www.who.int/water_sanitation_hea ... 563550/en/

there's also that bit in the literature about night shift nurses being at higher risk of ms, specifically due to reduced exposure to sunlight. then there's the latitude effect etc etc.

now for stress. your body excretes magnesium when stressed whether emotional, or physical (from exercise to injury to surgery). this is easy to verify in the literature but for convenience here's one link http://www.jle.com/fr/revues/mrh/e-docs ... icle.phtml

stress is just one thing that can impair magnesium status. you can also be taking in things that might mess with your magnesium status (and other essential nutrients). some of these include certain medications (eg PPIs), d3 (bummer), alcohol, coffee, and/or improperly processed phytates (which is why my preferred bread is made from sprouted grains) to name a few.

depending on lifestyle, you need about 300-400mg a day to maintain mag status. more if you are trying to increase stores. it's more complicated when supplementing d3.
taking d3 is a drain on your body's mag resources. for anyone taking d3 daily, some mag should be taken with the d3, and some at another time of day to allow your body's other processes access to the mag input. if taking supplemental d3 50,000 once weekly, you should have no problem balancing out the impact on magnesium absorption.

besides minimizing the stresses and antinutrients described above so that you can benefit properly from mag intake, food and good quality water are your next best bet. unfortunately if you're on city water, the magnesium is removed so that the pipes don't crust up with mineral deposits. see WHO link above for full discussion re magnesium and drinking water. to get the most magnesium from food depends to a large extent on preparation and serving sizes. dark leafy greens like spinach and chard are great, but you need to eat a full cup serving of *boiled* greens to get a solid 150mg magnesium input. lots of people will say 'oh i eat spinach' and figure that should be fine, but they don't do the math. you have to keep greens and/or other high mag foods on the daily agenda to keep up with day to day requirements. with chard you boil for 3 mins then drain (have to get the oxalic acid out) and for spinach it's a 1 min boil. one of my personal little magnesium maintenance practices is prepping greens per the above, then freezing them in a cookie sheet, then cutting them into blocks so i can add them to recipes, into sauces, soups, etc. i have ziploc bags of little blocks of spinach and chard in the top drawer in my freezer as we speak, and use them pretty much daily. a quarter cup serving of sunflower seeds, pumpkin seeds or cashews can represent about a third to a half of your daily requirement. top mag food details: http://www.whfoods.com/genpage.php?tnam ... #foodchart

i confess i am not up to snuff when it comes to phytate/antinutrient mitigation via soaking of grains etc. i don't eat a ton of grain anyway, and all this stuff is a process right, can't take all the steps at once. more info here http://wholelifestylenutrition.com/heal ... pare-them/
i don't have time to dig up any science related to the phytate/food prep debate right now. i feel like if i had previously found anything major, i would likely be taking more action in this dept now.

more about non-food sources: you can also absorb magnesium through the skin. epsom salts baths are an option. they say magnesium chloride flakes are more biologically appropriate than mag sulfate crystals. i have no science at my fingertips to back that particular nuance up, and should be working on my thesis right now not procrasinating :S you can also make a high potency solution of epsom salts (or alternative) and water, and apply topically.

as for oral supplements, not all are created equal. that is kind of an understatement. they are very very very different. at first i just went with what i could find easily (mag oxide) and regretted it. sure mag oxide is fine as a laxative, as LC noted above. but for absorption you need a higher quality product.

if you take too much mag oxide, you will know as you race for the nearest bathroom facility.
if you take too much mag glycinate, you could feel a sluggishness in your muscles.
you can also mistime mag intake. i learned the hard way not to take highly absorbable mag bisglycinate on an empty stomach at bed time. (which had been fine using mag citrate). it gave me an awful cough (to the point of dry heaves) which deprived me of sleep and i suffered for a year before making the connection.
ultimately i settled on magnesium glycinate. one powder capsule delivers 180mg. because my diet is reasonably good and my antinutrient habits negligible, i don't need to take this daily.

so backing out of the weeds a bit, overall, i personally think how these widespread nutritional issues play out in individuals depend to various degrees on genetics, maternal nutritional status http://www.who.int/nutrition/publicatio ... isease.pdf , and how different lifestyle factors (such as diet, activity levels, and so on) either mitigate or exacerbate risk. k back to thesis i go.
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glovedo
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Re: New here

Post by glovedo »

Wow! I thought I was doing good getting my protein/carb ratio good enough to lose a good bit of weight. Didn't know I would need a doctorate to maintain a proper diet... Ha I will look into it and see what the doctor has to say. Thank you both for the tip!
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jimmylegs
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Re: New here

Post by jimmylegs »

haha yes ppl don't realize. just as a heads up, your doc may not be up to date on the nutrition literature, esp as pertinent to ms. nutrition is a relatively new idea at med school:

Implementing nutrition into the medical curriculum: a user's guide (1990).
http://ajcn.nutrition.org/content/52/2/401.short

Status of nutrition education in medical schools (2006)
http://ajcn.nutrition.org/content/83/4/941S.short
"On average, students received 23.9 contact hours of nutrition instruction during medical school (range: 2–70 h). Only 40 schools required the minimum 25 h recommended by the National Academy of Sciences. Most instructors (88%) expressed the need for additional nutrition instruction at their institutions."
they really should refer to specialists

Nutrition in primary care: Current practices, attitudes, and barriers (2010)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2837706/
"Rural physicians referred patients to dietitian services more frequently than urban physicians did (41.7% vs 21.7% made more than 20 referrals to dietitians each year). Nearly all physicians identified lack of time and compensation as the strongest barriers to providing nutrition guidance. Training was not considered to be as strong a barrier to counseling, even though 82.3% of family physicians reported their formal nutrition training in medical school to be inadequate, and only 30% of family physicians reported currently using any nutrition-related resources."

that's the tip of the iceberg.
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ElliotB
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Re: New here

Post by ElliotB »

"proper diet"

I don't think anyone knows for sure what the proper human diet is, but there are many that think they do and most are likely incorrect.
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jimmylegs
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Re: New here

Post by jimmylegs »

blanket diet recommendations seem rough to me. in some general cases they can be good, but certain prescriptive ideas don't accommodate individuals' pasts, implications of tweaking to suit personal tastes, or broader lifestyle factors.
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