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Postby CupcakeCat » Tue Feb 14, 2017 3:56 am

Hi!

I wanted to say hi and introduce myself. I joined the forum so I can learn more about MS and maybe ask some questions. I recently had an MRI which might indicate MS or at least lead to some more testing. I have a copy of the report and see my specialist in a few weeks to discuss it. I want to learn as much as I can before then so I can make the most of my appointment:)
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Re: New to the Forum

Postby jimmylegs » Tue Feb 14, 2017 6:08 am

hi and welcome :) happy reading! lots of info and support here. anything particular send you to the mri?
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: New to the Forum

Postby CupcakeCat » Tue Feb 14, 2017 8:17 am

Hi Jimmy!

I went to see the neurologist because I was having severe headaches off and on for some time. I get iritis often (related to another health issue) and the last time I was in at the eye clinic, they suggested I see a neurologist because while they found inflammation, they didn't think it was enough to be causing all my issues at the time. I had a hard time getting a referral at this time.

When the headaches became constant, I started having some scary episodes where the headaches would suddenly get way worse, my vision would dim, I would have trouble speaking, I would get flushed, my heart would race and sometimes I'd have trouble standing up. I asked again for a consult and got one this time :)

When I was at the consult, he ordered an MRI to rule out aneurysms and a few other things. I got a copy of the report from my family doctor. It was negative for aneurysm and the other things the specialist wanted to rule out but it showed some T2 hyperintensities suspicious for demyelination. It also showed some non specific ones.

I see him again in a few weeks and I want to be as prepared as possible. I'm quite concerned that these symptoms will be brushed aside because I have other health issues.

I kind of wrote a book here. Sorry!!
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Re: New to the Forum

Postby jimmylegs » Tue Feb 14, 2017 9:11 am

no worries, the more that is known, the better. if you are comfortable doing so, info on the other health issues could be informative. big picture and all that :) it is certainly true that we do often need to be our own advocates. smart of you to seek all the info you can!
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: New to the Forum

Postby CupcakeCat » Tue Feb 14, 2017 3:32 pm

I've had Ankylosing Spondylitis so nice I was in my teens. I wasn't formally diagnosed until my mid 20s though.

I also had a work accident that caused significant nerve damage to one arm. After three surgeries and a ton of physio, I think it's recovered about as much as it can.

I've found that a lot of doctors try to attribute any symptoms I have to my AS. I have asked doctors several times if there was another condition causing some of my symptoms, but it wasn't until recently that they've thought it might be possible.
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Re: New to the Forum

Postby jimmylegs » Tue Feb 14, 2017 4:16 pm

sorry to hear about what you've been going through :S

i think many of us here will be able to empathize with a tendency in docs to continue to attribute anything to a preexisting condition more often than we'd like. ... or in my case, to say nope! we don't acknowledge with your supposed preexisting condition (bc computers are NEVER glitchy :roll: hehe) or that it could even be a factor, and we're giving you this dx, so deal.

can i ask if your docs have advised you in terms of optimizing health? maybe a dietitian is in the mix to help balance pro and anti inflammatory influences? i'd be surprised to some extent if you had - there doesn't seem to be very much info on AS nutrition out there in the academic literature.

i'd have more to go on if just providing info on how to avoid being like an ms patient. you could perhaps start with a look at magnesium since it's a very common issue, with deficiency known to occur in the normal range, known to be low normal in ms patients, is anti-inflammatory, and is also implicated in headaches, arrhythmia and blood pressure.

if you have not already done so, you can evaluate your daily mag intake, assess whether any routine meds could be interfering with mag status, consider adding foods high in magnesium, ask for a serum magnesium test, look at topical or oral supplement options, and so on.

lots of things to try in case you are interested and have not already exhausted that line of thinking! :)
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: New to the Forum

Postby lyndacarol » Tue Feb 14, 2017 6:37 pm

CupcakeCat wrote:I've had Ankylosing Spondylitis so nice I was in my teens. I wasn't formally diagnosed until my mid 20s though.

"Vitamin D deficiency in patients with SpA is prevalent, may be related to disease activity" August 20, 2015 Ankylosing Spondylitis
http://www.healio.com/rheumatology/spon ... e-activity


Ankylosing spondylitis (a type of arthritis) worse with low vitamin D – Jan 2012
http://www.vitamindwiki.com/Ankylosing+ ... 3+Jan+2012


If your doctor has not ever ordered the vitamin D blood test called "25-hydroxy D," please request one. This test is not yet routinely done as part of any standard panel – it must be specifically requested. (Also, please request your own copy of the test results so that you have the actual number.)
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Re: New to the Forum

Postby CupcakeCat » Sun Feb 19, 2017 2:41 am

Hi again,

I don't remember my doctor or specialist ever recommending a dietician for this. At one point a few years ago, I had crazy low blood pressure that got worse when I stood up and we discussed it then, but never in relation to my AS. I do have super low B12 that hasn't gone up significantly without injections. A few years ago I saw the on call doctor at my family doctor's practice and she ran some blood tests and added a b12 one to it. She had a fresh perspective on my issues of the day amd that's when my b12 issue was discovered.

I see my doctor again soon and I'll ask about Magnesium. I'll go check my medicine cabinet as well. He asked me to start taking a supplement and I'm forgetting which one.

I'll also ask for a Vitamin D test. I'm going to go read those articles now.

Thank you both so much :)
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Re: New to the Forum

Postby CupcakeCat » Sun Feb 19, 2017 2:47 am

In the first article where they mention the common issues of Vitamin D deficient patients, I have the last two: SI damage seen on scans and HLA-B27. I believe my sister has both as well. She's just been diagnosed with AS in the last few weeks. She only started having flares in the last year, so I'm hoping that if they treat her aggressively from day 1 that she can have an early and very long remission.
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Re: New to the Forum

Postby NHE » Sun Feb 19, 2017 3:30 am

CupcakeCat wrote:I don't remember my doctor or specialist ever recommending a dietician for this. At one point a few years ago, I had crazy low blood pressure that got worse when I stood up and we discussed it then, but never in relation to my AS. I do have super low B12 that hasn't gone up significantly without injections. A few years ago I saw the on call doctor at my family doctor's practice and she ran some blood tests and added a b12 one to it. She had a fresh perspective on my issues of the day amd that's when my b12 issue was discovered.

Try a sublingual supplement that contains methylcobalamin. I happen to like the ones from Superior Source brand, but there are many to choose from (note that I found Jarrow's methylcobalamin to be ineffective). You can also try ones with both adenosylcobalamin and methylcobalamin such as Superior Source's Advanced B12. These are the two active forms of B12 used in the body. Source Naturals also makes a sublingual adenosylcobalamin tablet known as dibencozide. This is the form that's stored in the liver and also used by mitochondria. If you have neurological symptoms, then it's best to have B12 at 600-1000 pg/mL. By the way, did you get folate tested (via red blood cell folate)? Low folate can inhibit the recycling of B12 back to the active methylated form and drive B12 down over time.

CupcakeCat wrote:I see my doctor again soon and I'll ask about Magnesium. I'll go check my medicine cabinet as well. He asked me to start taking a supplement and I'm forgetting which one.

Try a magnesium glycinate supplement. I'm currently using one from Doctor's Best. It has magnesium glycinate and magnesium lysinate. These amino acid chelates are readily absorbable forms of magnesium.

CupcakeCat wrote:I'll also ask for a Vitamin D test.

Good. You'll want D3 to test at about 50-70 ng/mL.
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Re: New to the Forum

Postby CupcakeCat » Sun Feb 19, 2017 11:19 am

I get a B12 injection every other week. Are you suggesting supplements as well?
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Re: New to the Forum

Postby jimmylegs » Sun Feb 19, 2017 12:57 pm

if not b12 injections + supplements, perhaps instead of or in addition to other supplements are an excellent idea - everything is interconnected and working together.

healthy well rounded whole foods, per public health dietary recommendations are a first step many ignore (even the health care pros who work on the reactionary side of the health/disease managment equation). yes improvements to food guides should be made, but even with the resources we do have, many aren't in the habit of following them. in current typical food environments, it's just too easy to make decisions that aren't really in our best interests.

re b12, what is the form and dose of b12 you have injected? you might be able to save $$ and get a more bioavailable / active product if you go with an over the counter sublingual methylcobalamin option.
sublingual b12 goes straight into the bloodstream with comparable efficacy to injection. with sublingual strips at times i've taken 1000 - 2000 mcg per day when your daily requirement is more like 24 mcg.

each person's response to supplementation will vary depending on status for other cofactors. from your description, it doesn't sound like you are dealing with pernicious anemia. good news :) You might see better response to b12 by adding a potent multivitamin and multimineral to your regimen. re potent, there are products for athletes which deliver extra nutritional punch. they're designed for health maintenance for someone active and generally adhering to dietary guidelines. they can also be thought of as a bit of a booster for someone who is in poorer health and healthy maintenance doses are less likely to do the trick. i have used athletic multis in the past, even when less active, to help top up depleted stores in tissue.

i mentioned magnesium above given its links to some of your stated symptoms.
magnesium is also an important cofactor for vitamin d synthesis in skin and vit d absorption from dietary or supplementary sources.

a cofactor story.
before: i took high dose d3 (50K x 10 days = 500,000 IU d3) and got a 50 nmol/L (20 ng/ml) boost in serum level.
then i figured out and fixed issues with cofactors such as magnesium and zinc, without realizing the impact of cofactors on vit d3.
after: i took a second, smaller round of high dose d3 (50K x 8 days = 400,000 IU d3) and got a 170 nmol/L (or 70 ng/ml) boost in serum level.
moral: interactions are really important!

recent forum post on AS and vit d: undiagnosed-f54/topic28650.html#p245665

per the above you can probably expect to be in the 22 ng/ml ballpark. having all the cofactor info in mind, i would never personally suggest to anyone that they aim for anything higher than 40 ng/ml D3 in serum, without ensuring good well rounded status for essential nutrients in general. there's loads of related debate along those lines on the forum.

imho it would be very wise to ensure that your daily intake of magnesium meets basic requirements. it is well recognized that many don't meet daily needs for magnesium or for d3. attention to both is good. magnesium provides a foundation for working on d3. just working on the d3 alone can lead to misconceptions about the dose needed to achieve a desired improvement in serum level.

ppl who want to work on d3 should first ensure that mag intake is at least 7 mg/kg body weight/day and no more than 10 mg/kg body weight/day. there are all kinds of resources which will tell you how many mgs of magnesium are available from a given serving of food. supplements like the aforementioned magnesium glycinate (my personal fave - NOT magnesium bisglycinate) can certainly help top you up. 'food first' is the best way to think about it however :D

hope that extra info helps!
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
User avatar
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