Crazy symptoms, scared to death

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Re: Crazy symptoms, scared to death

Postby lyndacarol » Fri Apr 07, 2017 7:22 pm

EllieB wrote:I saw a nutritionist the day after my last post and she started me on magnesium, calcium, b complex, vitamin D (she was familiar with the grassroots site and hey we are in CA!) omega 3 (but I had to stop that yesterday in prep for spinal tap I guess it affects bleeding)
Since everyone can respond differently to the same dosage amount of vitamin D, only repeat testing will confirm that a person has reached the desired serum level while taking a particular dosage.

What dosage does your nutritionist prescribe for you?
Chart showing intake level necessary for change in serum level:
http://grassrootshealth.net/media/image ... single.pdf


Does your nutritionist plan to retest your vitamin D level after taking supplements for 2-3 months?
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Re: Crazy symptoms, scared to death

Postby EllieB » Sun Apr 09, 2017 7:24 am

Sorry for late reply.

I saw an RD not nutritionist. I misspoke above (thought they were the same but maybe not?) There is no certain timing of the supplements and they were "suggested" not actually prescribed. The report was sent to my doctor to make the actual decision what I should do. I was told that I needed 9000 Vit D daily to raise my level to 40. I'm taking 10,000. I was also told I could either take a general multivitamin with minerals or split it out into a b complex and magnesium and calcium supplement because I may not need the extras since I eat well. Either way was acceptable. I was advised to start at 200 mg magnesium and see how my body tolerates it. I could then raise it up to but no more than 500. At 250 mg I have gastrointestinal symptoms so I lowered back to 200 and am fine.
Calcium citrate 500 mg
Both are chewable tabs.

The b complex I chose was on lower end because I don't want to OD and want to be able to test different doses. This particular combination was the lowest I could find. It's two tabs to reach the below dose. I'm currently taking two. (The multivitamin with minerals was a horse pill so I decided against it!)
Thiamine 750 mcg
Riboflavin 850 mcg
Niacin 20 mg
B6 4 mg
Folic acid 400 mg
B 12 30 mcg

I added 500 mg vitamin c just for the heck of it.

My recent lab values as follows: (prior to taking any supplements)
B 12 - 416 pg/ml
Folate >24
Calcium 8.7 mg/dl
Potassium 4.0 mmol/l
Sodium 140 mmol/l
Ferritin 77 ng/ml
That is all that was tested for vitamins/minerals

I honestly didn't feel like the appointment was of great help. It felt more like she was less than helpful answering my questions vaguely and saying what I wanted to hear based on questions I asked (like what supplements help tremors). She told me to try cutting out gluten but I had already done that long ago just for general health reasons not insensitivity. I saw an RD years ago when I had put on a few pounds and I learned so much from her! I think the problem here was I found someone with an immediate appointment availability which maybe indicated lack of experience or just no patients hahaha. Lord knows. My old RD lives in another state. I am tempted to fly out and see her hahaha.

Other things I am doing: laying in the sun minimum 20 min with arms legs and belly exposed during peak hours
Stopped taking gabapentin (they started me on it for the facial pain I was having in January) while I only took it at night- 200-300 mg to help me sleep- I read that a rare side effect is neuropathy and feeling of weakness with parasthesias. I haven't taken since Wednesday. Right after my ER appt they had me take it three times a day and I didn't notice it helped. I only did that for three days. Then went back to night routine.

Yesterday I woke up and my walking felt strong and my tremors were reduced but the stinging and painful goosbumpy waves (without goosebumps) were still bad. After working full day lack of coordination returned, had difficulty typing up my reports, extreme fatigue mainly in left arm, pain in my fingers calves and thighs and general fatigue. I napped two hours after getting home, woke up feeling better. Took dog on walk (one mile, slow pace, meandering and letting him have fun) and it all returned.

Still waiting for Lyme results. Starting to wonder if this is some sort of delayed anxiety syndrome or BFS since the intensity comes and goes. Also, while all of this is still happening in my sleep, my BF reports that when my full body tremoring starts if he lays his leg over the backs of my thighs it seems to stop or at least die down so he can sleep. I am sleeping when all this occurs. There are times when the full body tremoring jolts me awake but it's not often. He is more aware of it happening when I sleep than I am! the twitching and tremoring also get much worse when the temp drops below 65. And one more weird symptom- mottling of my arms and legs but no cyanosis or other signs of lack of oxygen and my oxygen SAT is always good at docs.

I have no strength loss, just the feeling of strength loss. This is encouraging. My coordination issues feel like a slowed response, like I tell my index finger to do something and it's fighting me but still does it, just not smoothly. Also noticing if I grasp something then let go that's when the twitches hit bad. Or holding a heavy object will cause large motion twitches (i.e. Filling the dogs water dish at the sink). I'm still having cramping in same areas without any change but it comes and goes. I feel that knowing these things come and go points more to something benign rather than some larger scary disease which is comforting :)

Anyway, that's where I am today. Feeling a bit more encouraged and less like a crazy person. Also feeling accomplished when I can push past it and keep going, though sometimes that backfires hahaha. My spirits were pretty low yesterday but today they are good.
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Re: Crazy symptoms, scared to death

Postby lyndacarol » Sun Apr 09, 2017 10:25 am

EllieB wrote:I saw an RD not nutritionist. I misspoke above (thought they were the same but maybe not?) There is no certain timing of the supplements and they were "suggested" not actually prescribed. The report was sent to my doctor to make the actual decision what I should do. I was told that I needed 9000 Vit D daily to raise my level to 40. I'm taking 10,000. I was also told I could either take a general multivitamin with minerals or split it out into a b complex and magnesium and calcium supplement because I may not need the extras since I eat well. Either way was acceptable. I was advised to start at 200 mg magnesium and see how my body tolerates it. I could then raise it up to but no more than 500. At 250 mg I have gastrointestinal symptoms so I lowered back to 200 and am fine.

..............

Other things I am doing: laying in the sun minimum 20 min with arms legs and belly exposed during peak hours
Which form of magnesium do you take? Magnesium oxide is "famous" for its laxative effect (only 4% is absorbed and used by the body; the rest stimulates the intestines). Our nutrient guru here at ThisIsMS is jimmylegs – her recommendation is for magnesium glycinate.

She advocates the diet as the first source of nutrients; she can give you info on your supplements and testing.

As for vitamin D… soaking up the sun's rays is an excellent idea – remember, NO sunscreen!

Your Vit D dosage seems reasonable (The vitamin D form, D3, is preferred over D2.)

Vitamin D2 is much less effective than vitamin D3 in humans. (2004)
Laura A. G. Armas, Bruce W Hollis, and Robert P Heaney
http://www.ncbi.nlm.nih.gov/pubmed/15531486
Full Text (5 pages): http://press.endocrine.org/doi/pdf/10.1210/jc.2004-0360

Abstract
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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Re: Crazy symptoms, scared to death

Postby EllieB » Sun Apr 09, 2017 12:38 pm

It says "Magnesium (as magnesium oxide, magnesium aspartate hydrochloride)

I do take the magnesium before bed as I remember reading somewhere a long time ago it can help with sleep. I just read now though that taking calcium can reduce magnesium absorption.

Figures

Spent a fortune on these supplements and the whole time I was shopping thinking I had no clue what the heck I was buying hahaha. I sent email to my chiro to see if he knows a good RD or nutritionist to refer me to. Can't hurt, anyway.
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Re: Crazy symptoms, scared to death

Postby NHE » Sun Apr 09, 2017 1:19 pm

EllieB wrote:It says "Magnesium (as magnesium oxide, magnesium aspartate hydrochloride)

I do take the magnesium before bed as I remember reading somewhere a long time ago it can help with sleep. I just read now though that taking calcium can reduce magnesium absorption.


Here's a good magnesium. If you take 2/day, then one bottle is a 4 month supply.

https://www.vitacost.com/doctors-best-h ... -tablets-2

In addition, here are some thoughts to consider regarding calcium supplements. It's best to get calcium from food sources. Calcium supplements have been found to cause hypercalcification in the blood which leads to calcium plating out in your arteries and veins.


Here's a link to good food sources of calcium.

http://whfoods.com/genpage.php?tname=nu ... #foodchart
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Re: Crazy symptoms, scared to death

Postby EllieB » Sun Apr 09, 2017 8:25 pm

So, an interesting thing occurred this afternoon. I had taken a nap and when I woke almost all of my symptoms had gone. No tremors, very few twitches, the only thing remaining was some lack of coordination in my thumb and stinging sensation when things pressed on my skin (like the bridge of my sunglasses, the knees of my pants when I sit or the sleeves of my jacket when I bent my arms). I am walking well with few tinglers too! Obviously, it will be curious to see what happens next but I am feeling like maybe whatever it was isn't so ominous, like I originally surmised. Keeping my fingers crossed this continues to evolve into complete resolution! Could it be the supplements? The stopping gabapentin? I'm not sure what it was but I'll take it! Keep your fingers crossed for me!
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Re: Crazy symptoms, scared to death

Postby jimmylegs » Mon Apr 10, 2017 5:47 am

hi ellie in some places nutritionists and RDs hold the same status. where i am, anyone can call themselves a nutritionist (there is no mechanism for registration) while RDs are Registered Dietitians with x amount of relevant education etc.

re your shared info, if 9000 IU per day of supplemental d3 readily gets you up to 40 ng/dl of serum 25(OH)vitd3 then you can ease off. your daily sunshine routine should be enough once there, esp if you have enough dietary mag in the picture. worth monitoring. we need adequate mineral status, particularly magnesium, to utilize vit d3 via oral sources or cutaneous synthesis. be careful if you continue high dosing d3; researchers are only just starting, intermittently, to look at things other than calcium when assessing high dose oral d3 intakes. to date 'long term' studies of such intakes, other than a handful of case studies, don't exceed 6 months' duration.

it's only mag oxide that creates gi symptoms, due to its inorganic, insoluble form and associated poor absorbability. often when i go looking for my fave mag glycinate, i'll get shown mag bisglycinate but i know i don't personally handle that form well. straight magnesium glycinate does the trick for me. depending on the brand it can cost $20-$50 for the brands i prefer. in terms of the actual product i like best, i stick with the $20 version.

as for timing. it's best to always take some mag at the same time as d3. then take a separate mag dose to ensure your body gets what it needs without having the d3 drawing on that input for its own purposes.

re max magnesium per day, it varies whether you're talking from food and fluid sources, whether there are magnesium depleting factors in the mix, which include exercise, and supplement sources as well. for food and fluid and supplement intakes combined, you're looking for 7-10mg/kg body weight per day. full cup servings of boiled and drained spinach and swiss chard, 1/4c servings of pumpkin seeds and cashews, 1c servings of black beans, these all make solid 100-150mg ballpark contributions to daily mag intake. personally with a high mag diet (which coincidentally adds loads of calcium) i can only tolerate one magnesium glycinate pill (180mg elemental mag) per day. beyond that leg muscles get sluggish.
i would never take more calcium than magnesium personally. i did try to take calcium for a while but it made my back hurt. beyond diet, when it comes to supplementing i prefer taking magnesium, which ups serum d3, which in turn aids calcium absorption from dietary sources.

b complex and c look fine. hopefully you can find a multi product including minerals that you can tolerate, to help avoid driving anything out of balance. i personally use a product that involves 3 normal size powder caps per day to reach the stated daily serving size on the label. ie AOR multi basics-3. beyond that, omega 3 fatty acids - i havent been eating much high quality fish lately, need to get back in the habit :S

re labs, nutrients look decent, potassium could potentially be a bit higher, ferritin looks great. would be better, in terms of being sure you did not match an ms patient profile, to be sure of high normal serum magnesium and high normal serum zinc.

glad to hear your symptoms are somewhat better, hope that continues :)
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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Re: Crazy symptoms, scared to death

Postby EllieB » Mon Apr 10, 2017 6:40 am

Thank you I appreciate the advice. I eat a lot of cooked and uncooked dark greens like chard, spinach, beet tops etc. I probably only eat legumes and pumpkin seeds once a week though. Not a fan of cashews but I eat other nuts, will look those up. Will add more beans too :)

I will ask for those labs to be drawn when I see my PCP Wednesday. Is that typical of MS? I'm a little discouraged, woke up and it's back again (minimal tremors though) plus a leg that doesn't want to hold my weight. It's rubbery. MS doesn't come and go like this though does it?
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Re: Crazy symptoms, scared to death

Postby jimmylegs » Mon Apr 10, 2017 7:30 am

hi no problem :)

good to hear re greens including beet tops. with uncooked greens you just don't achieve 150mg of magnesium in a 1c serving; it's not dense enough. if juiced maybe, but then the oxalic acid content is not reduced (which it is via boiling and draining) - and oxalic acid can cause its own problems (have personal xp there...). i recently heard a broad recommendation where cooked dark leafy greens are concerned, along the lines of 3 servings per week, 1.5c of greens per serving. i have started adding greens to mashed root veg, soups, sauces, stews, and the greens always were in the mix with a nice brown rice risotto etc.

re food sources, quinoa is another decent option delivering from 60 to 80mg of magnesium per 1/2c serving.

gabapentin action mimics related work done by zinc (except zinc does a zillion other things as well...)

re zinc and magnesium labs, these are not typically done for ms patients, but can be useful/telling. in the literature, for ms and many other chronic illnesses, mag and zinc levels are often recorded as low normal. because low normal levels are often associated with illness and high normal levels with health, researchers are starting to call for a closer look at reference ranges currently in use. in some contexts (not ms specific) pharma drugs have been shown to do a better job because they mimic the effect of increased dietary magnesium (so why pay for the drug when you could increase mag density in diet?), or do a better job of elevating serum zinc (should that not ideally happen from increasing healthy zinc dense foods in diet?)

ms is a different animal for all, and i am no diagnostician.. what i can say is that symptoms of nutrient deficit can certainly be felt on a day to day and sometimes an hour to hour basis, once you know what you are looking (feeling?) for.
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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Re: Crazy symptoms, scared to death

Postby EllieB » Fri Apr 14, 2017 5:20 am

Lyme test was negative. MD is expediting the lumbar puncture. Hope to be scheduled soon.

PCP wouldn't order the mag or zinc said she didn't want to overstep the neuros territory. I asked the neuro and he will have that run when they do my labs for the spinal.

In the meantime I've dissected what I am feeling when my function is compromised. It's brought on by action of a muscle. As soon as the action starts the muscle begins to have fine twitches preventing me from reaching the end of the action smoothly. When that is happening there's a flow of numbness proximal to distal over the muscles I am using. I can still complete the action it's just jerky, which is what makes me feel like my legs aren't working (quads jerking) or fingers not working (extensor and flexor jerking in opposition). Everything is hugely worse when the temp is below 70 or if I am stressed even the slightest (long drives stuck in traffic or trying to make a deadline at work and cutting it close or something emotional like prepping to fire an employee yesterday).

I decided to go off my progesterone (after talking with MD) even though it's unlikely to be the cause, it can affect neurological function. Usually in a positive way supposedly but maybe it has some effect causing imbalance elsewhere-emotional, hormonal etc- that's influencing this. I haven't taken for 3 days and notice no difference but it takes awhile to get out of your system.

The blisters may just be a red herring but they are spreading, now to my shoulder and on both hands. No nerve pattern to them. No one seems to think they are related but I can't help thinking they are given the intense nerve like pain they illicit when touched.

Still hoping for quick resolution. Trying hard to find ways to manage day to day with this.
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Re: Crazy symptoms, scared to death

Postby jimmylegs » Fri Apr 14, 2017 9:00 am

hi ellie glad to hear your lyme test was negative, and that you have access to serum mag and serum zinc testing via the neuro.

re muscle issues on the surface the situation does sound like electrolytes are a possibility and on that note, as previously mentioned, could be an idea to work on increasing potassium. esp while waiting for magnesium numbers to come in.
i double checked for a reference serum potassium range and found 3.5-5.3mmol/l in the literature. http://www.sciencedirect.com/science/ar ... 970301427X
see also https://www.nap.edu/read/10925/chapter/7
"Severe potassium deficiency is characterized by hypokalemia—a serum potassium concentration of less than 3.5 mmol/L"
so within the stated reference range, where are the cutoff points for mild or moderate potassium deficiency i wonder??
your 4 mmol/l level does place you decidedly into the lower end of the reference range, and a bit closer than you might like to that 'severe potassium deficiency' threshold.

re potassium intake, we need loads - at *least* 4700mg per day. and if other RDAs are any guide, that might even be low. one of the signs in ms patients related to spasticity: clonus. early on the docs used to test me by jerking the bottom of my foot sharply upward, toes toward knees, and then counting the resulting reactionary 'beats'. have your docs done the same when examining you? related: https://en.wikipedia.org/wiki/Clonus#Cl ... spasticity does it sound anything at all like what you've been experiencing?

check out our top three 'usual suspects' for best healthy potassium dense foods:
http://www.whfoods.com/genpage.php?dbid ... #foodchart
(recall that the 1c measure for greens servings is post 1 min (spinach) to 3 min (chard) boiling and draining to increase density and reduce oxalic acid)

luckily, as we can see from looking at the foods list, boosting dietary potassium should help boost dietary magnesium at the same time :D all good stuff!

sorry to hear blisters are spreading. i can't imagine what they are from but i do know that the only time i had open wounds without injury that refused to heal, i was zinc deficient. when i corrected for the effects of previous vegan diet and associated poor zinc status, wounds closed up and stayed gone. major relief! are you an oyster fan at all??? i am trying. not easy for an ex vegan who never liked shellfish in the first place :S (mildly amused now that you said 'red herring' hehe)

hopefully your forthcoming labs also give you some actionable results and that they help make a difference for you.
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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Re: Crazy symptoms, scared to death

Postby EllieB » Wed May 03, 2017 7:50 pm

Unfortunately only a metabolic panel was done not what I requested. I'm being more specific this time and ent the actual code for the test hahaha interestingly enough I'm still showing mild metabolic acidosis but not life threatening.
My spinal fluid came back negative for MS so that's good. At this point I have full body rash, petechia and swollen joints now in addition to the neuro issues so I've been referred to a rheumatologist for further testing. In meantime I have appointment with MAd naturopath who specializes in nutritional issues and mystery illnesses. It's expensive and not covered but he came highly recommended by my doctor. This will be the last I post here since it clearly isn't MS and I just want to thank everyone for their insight and support.
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