23 Years Old, Scared

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lyndacarol
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Re: 23 Years Old, Scared

Post by lyndacarol » Sat Jan 17, 2015 2:48 pm

Becca5766 wrote:Okay this really interests me. So you both are saying that my b12 is below the recommended level of the author? I prefer to wait for the spinal tap before I jump to the b12 side of things, I do believe supplements are necessary at this point when I do talk to my doctor. Don't mind my foggy mindedness, can you have MS and a b12 deficiency? At this point I'm not trying to be but I'm somewhat skeptical since they stated it was average (I know the average can be questionable according to some people) trying to be as open minded as possible here but I am having extreme difficulty thinking that this is the issue. As I said I will look into supplements, if it could be higher i assume its not that far off,I am taking a lot of this in as I am typing this but I will do the research as requested by you both and see if she will do that blood work for me. My red blood cell count is fine so in all honesty I am not too concerned
Because if it was a b12 deficiency my red blood cell count would also be off if I am correct.
You mentioned earlier (January 16, 2015 posting) that you are on short-term disability. I am not acquainted with the terms and benefits of this; maybe you have insurance that would cover the $150 cost of a urinary methylmalonic acid (uMMA) test. If not, and if this cost out-of-pocket is too much for you, maybe your doctor's office, your county health department, or a local social agency could help you find a way to get testing at a very low cost –or possibly even free. I think the homocysteine (Hcy) test and urinary methylmalonic acid (MMA) test are important.

As for being told that your B12 level was average… A lab's standard ranges for tests are established locally and statistically by all those taking the test – the sick people and the healthy people are "averaged" together. There can be differences from lab to lab. The actual numbers are more useful.

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jimmylegs
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Re: 23 Years Old, Scared

Post by jimmylegs » Sat Jan 17, 2015 4:42 pm

becca you might find this article interesting :)

Understanding nutrition, depression and mental illnesses
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738337/

they go over macronutrients, vitamins, and an array of minerals. this is another place where whfoods might be useful - you can find foods rich in the various nutrients listed and prioritize them when grocery shopping. you'll be pleased to see broccoli top of the list for chromium nutrition! ;D
http://www.whfoods.com/genpage.php?tnam ... #foodchart

also one thing i've done for people in the past is review weekly shopping lists and made suggestions on possible ways to reallocate spending dollars for optimal nutrient density. can't hurt to be getting the most bang for your buck!
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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Becca5766
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Re: 23 Years Old, Scared

Post by Becca5766 » Sat Jan 17, 2015 9:28 pm

That is a lot of information so thank you both so much again. I didn't know they tested b12 in the spinal fluid but I will be firm but nice to have them test my spinal fluid for my b12 as well saying I would like it double checked this way and that it would ease my mind. I fear that they would think I was being paranoid especially because of my "normal" b12 levels in their eyes but it is my body not theirs after all.

There is so much to this that it makes my brain hurt, all of it is helpful information however. If MS symptoms are similar to B12 deficiency symptoms and don't always show in the blood count early on, this is super concerning to me because if this is a deficiency that runs in my family it very well could of been misdiagnosed with my mom or uncle, that would be a mystery. I'm going to show her this thread and see her point of view, because if I push for this to be checked further and hypothetically it comes out that I have this issue, she needs to start asking questions herself. I definitely also feel this blood work is more important now after getting this extra info. Better to be safe than sorry. A hemotologist if it is refused is a great idea, if she (my neuro and PCP both are females) won't test or do bloodwork further in this area I will see what can be done. I will send my PCP a message explaining what you both have explained and why its important to me

Also very helpful links, I'll read more into them as soon as I can. Helping people with shopping lists is so nice! YAY brocolli! :D

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NHE
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Re: 23 Years Old, Scared

Post by NHE » Sun Jan 18, 2015 12:12 am

Becca5766 wrote:If MS symptoms are similar to B12 deficiency symptoms and don't always show in the blood count early on
With mandatory fortification of grains with folate, most often using folic acid, blood counts often don't show signs of B12 deficiency while neurological symptoms can still be present.

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Becca5766
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Re: 23 Years Old, Scared

Post by Becca5766 » Sun Jan 18, 2015 10:17 am

Messaged my doc personally on the website and requested those two blood panels you guys suggested and simply told her it would be appreciated to ease my mind. I should get a response in a day or so to get that done


THANK YOU THANK YOU for everything I know I keep saying it but I truly mean it

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jimmylegs
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Re: 23 Years Old, Scared

Post by jimmylegs » Sun Jan 18, 2015 10:21 am

afaic the mcv stuff is not necessarily the thing to focus on anyway, folate or no folate. to me that's kind of a barn-door-after-the-horse-is-gone approach..

eg worrying about folate's masking influences on the ability to detect b12 issues via impacts on mcv size is like waiting to worry about vitamin d3 status and its possible interactions with other nutrients until you have osteoporosis (international women's mean serum levels 26.8 ng/ml or 67 nmol/l) or rickets (eg serum levels from 5-15ng/ml or 13-40 nmol/l), rather than paying attention to the impairments in immune system function that start happening at much higher serum vit d3 levels.

also imho worrying about b12 status and things like hcy mma etc without considering status of other interacting essential nutrients (and not just folic acid!) is like worrying about vit d3 and inflammation markers without considering calcium magnesium zinc and so on. the longer i spend on this stuff the less i value studies of single nutrients. certainly supplementing (whether mandatory or voluntary) with isolated nutrients that disrupt natural ratios and balances is not a good idea. we see the consequences of isolated synthetic alpha tocopherol supplementation in increased cancer risk. emphasis on calcium supplementation resulting in increased risk of heart disease. etc etc.

this vid says it really well for me, particularly at 1m32s. it's worth the three minutes: i have a pretty big nerd crush on this guy's brain :D
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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lyndacarol
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Re: 23 Years Old, Scared

Post by lyndacarol » Mon Jan 19, 2015 10:48 am

We don't want you to be scared; my philosophy has always been that it helps to have the most information possible in any situation.

With your spinal tap scheduled for February, you may have learned about it already – perhaps your doctor has prepared you for what to expect – the procedure itself, possible side effects, and tips to cope. I have never had a spinal tap, but I know many others here have. Using the "search" function here will probably turn up many posts on spinal taps (a.k.a. lumbar punctures).

One of the most recent ones was started by wombat in November: http://www.thisisms.com/forum/general-d ... ml#p230512

Jimmylegs, NHE, and others can offer good advice – you only have to ask, or not.


And on another topic… I think you must be a very diplomatic person, Becca, when you thought to ask your doctor for blood tests (I assume these might be the homocysteine, Hcy, and methylmalonic acid, MMA, tests; or perhaps you requested the Hcy and HoloTc blood tests and a urinary methylmalonic acid test) since "it would be appreciated to ease my mind." I hope she will be cooperative – each doctor is so different; we just have to wait and see.

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jimmylegs
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Re: 23 Years Old, Scared

Post by jimmylegs » Mon Jan 19, 2015 10:53 am

eep another cross post haha.

so becca this post is recalling what you mentioned about concerns for the rest of your family. related google search:
http://scholar.google.ca/scholar?q=inte ... _sdt=0%2C5

particularly interesting title:
Non-genomic transgenerational inheritance of disease risk
http://onlinelibrary.wiley.com/doi/10.1 ... 2/abstract
"That there is a heritable or familial component of susceptibility to chronic non-communicable diseases such as type 2 diabetes, obesity and cardiovascular disease is well established, but there is increasing evidence that some elements of such heritability are transmitted non-genomically and that the processes whereby environmental influences act during early development to shape disease risk in later life can have effects beyond a single generation. Such heritability may operate through epigenetic mechanisms involving regulation of either imprinted or non-imprinted genes but also through broader mechanisms related to parental physiology or behaviour. ..."
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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jimmylegs
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Re: 23 Years Old, Scared

Post by jimmylegs » Mon Jan 19, 2015 10:56 am

related to your last post about the panels, curious which you had asked for, specifically? just to underline, it is important not to look at a specific nutrient like b12 and its associated indicators in isolation.. there are lots of nutritional issues to get on top of, if you want to ensure that you don't match average joe ms patient :)
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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Becca5766
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Re: 23 Years Old, Scared

Post by Becca5766 » Sat Feb 14, 2015 1:22 am

Update: got my ms diagnosis. They did all the blood work you suggested (the homocysteine, Hcy, and methylmalonic acid, MMA, tests) all looked normal. I don't have a b12 deficiency, thought my PCP did a vitamin D check but they apparently didn't so my neuro did, I'm at a 15 and now will be taking 5,000 ius with a multivitamin. The doctor showed me the MRI and my lesions, all which are where MS only attacks so a spinal was not done.


I'm choosing to go on tecfidera and if that fails I will be on rebif. Thank you all from the bottom of my heart for the support.

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jimmylegs
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Re: 23 Years Old, Scared

Post by jimmylegs » Sat Feb 14, 2015 6:36 am

ok when vit d3 is low it's important to look at other things like serum magnesium and serum zinc. how much of each are in the multi you will take? you will probably need a lot of mag to work with that level of daily d3 intake. do you know how much you are getting daily from diet? you'll probably want around 300mg just for you, and an extra 100-200mg to deal with the supplemental d3 intake. best to take some mag and d3 together, and the multi at a separate time.

personally, i have ended up with mag deficits from taking 5000IU/day long term with only so so improvements in serum vit d3 status. after identifying and correcting zinc and mag issues, my d3 absorption skyrocketed and i need much less intake now, to maintain much more satisfactory serum d3 levels. it was a pharmacist rather than any doc that clued me in to the d3 / mag interaction originally, and told me how to time my mag and d3 intake. i had already been taking magnesium daily, but by taking it at the same time as the d3, it was all going to that and there wasn't any left for all the other jobs mag has to do.
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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lyndacarol
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Re: 23 Years Old, Scared

Post by lyndacarol » Sat Feb 14, 2015 7:53 am

Becca5766 wrote:Update: got my ms diagnosis. They did all the blood work you suggested (the homocysteine, Hcy, and methylmalonic acid, MMA, tests) all looked normal. I don't have a b12 deficiency, thought my PCP did a vitamin D check but they apparently didn't so my neuro did, I'm at a 15 and now will be taking 5,000 ius with a multivitamin. The doctor showed me the MRI and my lesions, all which are where MS only attacks so a spinal was not done.


I'm choosing to go on tecfidera and if that fails I will be on rebif. Thank you all from the bottom of my heart for the support.
I am so glad to hear that you managed to get the homocysteine test and the methylmalonic acid test (I hope you are keeping your own file of your test results.). If a possible B12 deficiency can be crossed off the list of causes for your symptoms, you can feel more comfortable with the MS diagnosis. A low vitamin D3 level of 15 is probably to be expected of someone living in Maine; it can be addressed with supplements (and if the sun and springtime ever return to Maine after this awful winter you're having, try to soak up a few rays… Or how does a trip to Florida sound right now?!! Florida sounds good to me – I'm in Illinois.)

I have not tried Tecfidera or Rebif, but there are people here who have and can offer good suggestions. Keep in touch with your doctor about side effects and blood tests to monitor the development of antibodies and such.

We wish you all the best, Becca. We are here for you if you have any questions.
Last edited by lyndacarol on Sat Feb 14, 2015 11:41 am, edited 1 time in total.

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jimmylegs
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Re: 23 Years Old, Scared

Post by jimmylegs » Sat Feb 14, 2015 8:03 am

interesting side note re sun and vit d3. fibro patients, who tend to be low in mag, do not synthesize vit d3 in skin when exposed to UV rays at anywhere near the same rate as healthy controls (will track down the two studies that in combination support that statement). hopefully one day someone does a study to find out if magnesium repletion in FM patients stimulates their cutaneous d3 synthesis.
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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jimmylegs
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Re: 23 Years Old, Scared

Post by jimmylegs » Sat Feb 14, 2015 8:10 am

found em

The relationship between serum trace element levels and clinical parameters in patients with fibromyalgia
http://link.springer.com/article/10.100 ... 008-0593-9
"Serum levels of zinc (P = 0.001) and magnesium (P = 0.002) were significantly decreased ... Association between serum zinc level and number of tender points (P = 0.008) and that between fatigue and magnesium level (P = 0.003) was found as meaningful. According to the results of this study, it was asserted that serum magnesium and zinc levels may play an important role in the pathophysiology of FM."

Bone mass and vitamin D levels in women with a diagnosis of fibromyalgia
http://link.springer.com/article/10.100 ... 013-2434-2
"25OHD levels were also similar: 23.0 ± 9.5 ng/ml and 24.1 ± 9.6 ng/ml. [JL edit: similar, yes. healthy, no] However, while controls showed the usual summer rise in 25OHD, fibromyalgia patients did not."
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!

ElliotB
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Re: 23 Years Old, Scared

Post by ElliotB » Sat Feb 14, 2015 12:02 pm

I want to remind you that many do extremely well through diet, exercise, supplements, medication and lifestyle change. There is a wealth of information on this site and there are numerous books that can assist you as well. If you are open to advise, I will be happy to be more specific. I sure others will be pleased to provide their insights as well.

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