I have lots of questions and concerns

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I have lots of questions and concerns

Postby babyblooeyes » Tue May 22, 2012 10:17 am

I am supposed to set up an appointment with a neurologist after it was suggested by my rheumatologist and GP that my symptoms were suspicious for MS. About 8 years ago I had symptoms similar but not as severe and the MRI w/o contrast as far as I know was normal. No other tests other than bloodwork was performed at that time. Essentially the neuro seemed to think I was nuts. Back then all I can remember is severe heat intolerance after getting out of a hot tub and barely being able to out and weakness in my legs. I am guessing there was others but I just don't remember. After that I was diagnosed with rheumatoid arthritis and started treatment with methotrexate, rituxan, arava, and plaquenil along with other meds. I didn't really see hide nor hair of any odd symptoms not related to ra after that point. However, in the last month or two I have been having some serious balance issue ranging from very mild daily to falling down only twice in the last 2 months. I also had pain in my right eye with a dulling of color more of a darker vision from that eye and pain on movement. Never went to see anyone figured at my next appt if there was anything wrong that the opthamologist will pick it up then. Insurance issues. I have been having at least 3 times a week headaches behind that right eye but not severe just very dull and annoying. The latest things that have me seriously concerned is "not sweating when working out and muscle twitching/cramping/crawling or tightness in my right thing. Severe tightening of the calf muscle in the right leg where I think if I tried to start off walking the tendon would tear away from the bone. I had numbness in that foot for about 2-3 months maybe more that was just written off. Sometimes for about 2-3 days or so I would start a workout, not sweat, overheat and have to stop for a cool shower when I get off the machine I am weak, off kilter, and feel like I could pass out. This fatigue has been hell as well. It is different in that I feel heavy and can't do anything then end up having mood swings or something because of what is expected of me I guess. Oh, and just less than a week ago I was urinating on myself... just dribbling I guess but it was so wrong even when I would go it would still continue to come out. That only lasted 2 days and I wrote it off to having decided to go to the hot tub that day? The only of these symptoms that has really lasted for nearly those 8 years is the heat intolerance and I think I could potentially attribute a lot of the other issues to rheumatoid arthritis but what do I know. My question here is I really don't want to go through all of the you have a psychological problem ma'am crap again. It was devastating when they nearly had me convinced that I was just nuts before getting my RA diagnosis and I don't know if I can tolerate all that again. Do these symptoms sound consistent to you and since I already receive immune modulators is it worth it to add this to the list of other issues. And would the rituxan and other meds skew any of the results?

I am sure you guys are tired of these types of questions but I am kind of desperate.

Theresa
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Re: I have lots of questions and concerns

Postby jimmylegs » Tue May 22, 2012 12:16 pm

hi theresa welcome to the forum. sorry to hear you've been having such a bad time. if you are interested in pursuing a nutritional approach, let me know :)
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Re: I have lots of questions and concerns

Postby babyblooeyes » Tue May 22, 2012 2:25 pm

I have made significant diet changes when I thought that my RA treatments wouldn't be covered. Thank goodness I was able to qualify for some financial assistance in that matter. So, what have I changed since January 2012:

Zinc: orally once daily 30mg
Magnesium: orally once daily 250mg
Potassium Gluconate: 1100mg daily.
selenium 200mcg daily
Fish Oil 1200mg-3600mg daily
Vitamin B12 2500mcg daily or twice daily depending on fatigue
Calcium 1200mg daily
Vitamin D 1000iu daily
Multivitamin with D3

My diet has also changed. I don't eat until 1pm and stick with whole types of foods most of the time. I have gone gluten free recently and lost a bunch of bloated and decreased the loose stools.
I make a spinach/yogurt/kale shake at least 3 times a week and mostly more. I juice often to be sure to get ample fruit and vegetables in my diet.

I needed to lose weight and still do from intermittent steroid doses. I have recently dropped 60lbs. I also decreased soda consumption to 5% of my usual. I avoid artificial sweeteners like splenda, equal, etc. I have recently started using stevia.

Current medications:

Cymbalta 30mg daily to help control pain secondary to the arthritis.
Methotrexate injections 25mg weekly
Rituxan infusions every 4-6months.
Arava 20mg daily
plaquenil 200mg twice daily
Tylenol prn
mobic 15mg daily
Folic Acid 1mg daily
tramadol as needed
dilitiazem 60mg three times daily
Lasix 20mg daily

If you think you can add to this or help me by all means lets see what we can do. However, my question is do you think this could be MS? or am I going to get a doctor that tells me I am nuts or stressed? I find it strange that it has recurred after so many years in hiding and in a way hoping that it will do so again without intervention or interference.

Thanks
Theresa
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Re: I have lots of questions and concerns

Postby jimmylegs » Tue May 22, 2012 4:15 pm

theresa i'm afraid i can't say if you have ms or not - all i can do is advise on your nutritional regimen and testing.

all right well to start with that is a good looking regimen. here are my thoughts/comments

is your zinc balanced with any copper content? is there zinc and copper in your multi, and if so, how much?
you mentioned loose stools - what form of magnesium are you taking? i have a sneaking suspicion you're not taking a form that absorbs well. if you've had loose stools for a long time there could be impacts on absorption for other nutrients too.
how do you time all these nutritional supplements? can you give me an idea of how you would typically group them? do you take a few with each meal? if so, which ones with which meal? being aware of interactions will also be key to optimizing absorption.

your diet sounds very good, although not sure why you don't eat til 1pm? i personally don't avoid gluten (eg i had no gluten grains today until i got a sub for dinner) and it means i have to take more zinc to compensate. that greens shake and your juicing sound amazing. nice. have you ever heard of food inflammation factors? if not, i'll fire you some links to meals of mine that i worked out the rating for. could turn out to be a useful exercise for you too.

congrats on the weight loss! must feel great.

now as for all these meds, yikes. i don't have time to go over all of this right now, but i would expect there to be the odd nutrient depletion issue in there (with the exception of folic acid, since that's vitamin b9).

i'll look for your replies to my questions, and then we'll see if my suspicions are confirmed. if i'm right, a few tweaks might be in order. take care :)
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Re: I have lots of questions and concerns

Postby babyblooeyes » Tue May 22, 2012 4:56 pm

I don't see copper in this multi. I do however consume shellfish, nuts, potatoes and fruits on a near daily basis so figured I fulfill the 2mg daily requirement.

There is zinc in my multi: 15mg

Magnesium oxide is the one I am taking currently.

There is no specific timing of these. Most of the time I try to get them in around 1pm with my meals other than calcium which I take after dinner.

I don't eat until one because it is something along the lines of the paleo diet when people didn't eat but once or twice a day. It allows your body to absorb all of the food before adding other meal giving your digestive system a break. It is also considered an intermittent fast because after 12 hours without food your body starts to use fat for energy but because I don't want to put myself through a true fast I stop it at 14 hours. Usually, I get up at 6 to take my son to school then go back to bed until about 1pm. It seems I need a lot of rest or could be I am just bored. I work still full time Thurs- Sunday. People rely on me and when I can't perform the whole system breaks down. So suffice to say I am a bit annoyed at myself in this regard.

Thank you for the information. I assume food inflammation factors are different types of foods that one would consume that can increase inflammation in the body. I went on a program before that removed red meats, eggs, breads, milk, peanuts (could have certain other nuts), etc. removing common allergenic type of foods... it became quite expensive and I wasn't sure I saw anything positive come from it. However, I do know without a positive attitude and an open mind one may not find benefits in anything.
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Re: I have lots of questions and concerns

Postby jimmylegs » Tue May 22, 2012 6:15 pm

ok thx for the details. the reason i was asking about copper is because when you take zinc it can drive down copper levels. the 2mg is just to keep you on an even keel so that you can use the copper you get from food for everything else you need it for. tests for both serum zinc and serum copper could provide useful information, just to make sure your regimen is optimized.

i did suspect magnesium oxide would be in this picture. it's inorganic, less soluble, therefore less well absorbed. it's well known to have a laxative effect.
see if you can find one of the more soluble organic forms. currently i take two kinds through the day, 1-2 magnesium citrate tablets, and 1 magnesium glycinate capsule. citrate is a little better for absorption, and glycinate i have found to be the best to date of the various forms i've tried. if you had a magnesium glycinate pill after each meal you might notice a difference.

do make sure to take some of your daily magnesium well away from your daily intakes of vit d3. i have put myself into serious distress in the past before i learned to separate my mag and d3 intakes (you still take some mag with d3, but make sure to take some separately too).

thx for the clarification re fasting.

as for the inflammation factor thing, it's a useful way to balance intakes of various food types. i don't like elimination diets, because i had no red meat, eggs or milk for 15 years and then i got my ms diagnosis. with the IF rating you score your total food for the day, and try to aim for +200 overall if you have inflammatory illness. it's pretty interesting. i have to sign off for tonight but will post you some links tomorrow.
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Re: I have lots of questions and concerns

Postby babyblooeyes » Wed May 23, 2012 6:30 pm

Thanks for your insight. It looks like I need to change my multi to a senior option to get the copper I need. I can do that as I have that in the house. I am going to increase the vitamin D supplementation as well. I can't remember but a year or so ago my number was 20 which was borderline low and was put on supplements then but I had slacked off of them and a recheck showed my number had increased but of course this was during the summer and I spend some time in the son. I am just hoping that this worsening of heat intolerance isn't going to ruin my plans for the summer of spending time in the sun and at the pool but things aren't looking good in that department if I can't walk from my car to a building without issues of feeling exhausted, clammy, sick, and weak.
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Re: I have lots of questions and concerns

Postby Taurus » Wed May 23, 2012 8:47 pm

babyblooeyes

Please consider taking LDN on immediate basis; it will take care of your RA also. Further, please get your spinal alignment especially the atlas part and CCSVI checked also. Best regards
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Re: I have lots of questions and concerns

Postby jimmylegs » Thu May 24, 2012 4:19 am

also, can i inquire about the form of vit e in your multi? and how is your diet for foods rich in vit e? like swiss chard and spinach? sunflower seeds? almonds? http://whfoods.org/genpage.php?tname=nu ... oodsources
also have you ever taken vitamin e8 complex?
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Re: I have lots of questions and concerns

Postby babyblooeyes » Thu May 24, 2012 4:39 am

Yes, I forgot about vitamin E... I do take this 400iu daily. Spinach is pretty high... never heard of a vitamin e8 complex.
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Re: I have lots of questions and concerns

Postby jimmylegs » Thu May 24, 2012 3:22 pm

ok so re your vit E, is it d-alpha tocopherol, or dl-alpha tocopherol? either way, you don't want to take any kind of isolated alpha tocopherol. you want a mix of all four tocopherols and all four tocotrienols in their natural ratio. taking just alpha tocopherol will drive down the other fractions in your system. in research that effect has resulted in increased cancer diagnosis due to lower levels of tumour-suppressing gamma tocopherol in the body.
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Re: I have lots of questions and concerns

Postby jimmylegs » Thu May 24, 2012 3:31 pm

also the green veg are really high in vit k (clotting factor - i noted your mention of sticky blood) as well as vit e, so if you can boost some foods that are high in vit e and low in vit k, that might help balance things out somewhat. sunflowers and almonds are good, but they're higher in omega 6 fatty acid, so for omega 3s you can add walnuts and flax seeds (which also have vit e)
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Re: I have lots of questions and concerns

Postby babyblooeyes » Thu May 24, 2012 6:53 pm

Thank you so much for this information. Looks like I need to change a few things up.

You have been a godsend. I appreciate it.

Theresa
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Re: I have lots of questions and concerns

Postby jimmylegs » Thu May 24, 2012 7:07 pm

no problem! if there's a possibilty of nutrition helping a person i'm always happy to share :D
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