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Re: Symptoms questions... Docs are "waiting to see"

Posted: Sat Dec 21, 2013 9:03 pm
by cardarlinow
Ok, so do any of you know of any connection to gluten sensitivity or any other sensitivities (food related) or vitamin deficiencies that can cause sleep apnea? I'm not talking obstructive kind. As I don't believe I have that. Like I mentioned before, my sleep doctor retired before I got a final diagnosis. So the info I have received has been from the sleep techs because I grill them. ;) I just don't think I had a sleep problem ( or maybe just not as bad) as I do now. Which it started after my first son was born too. I'm looking for some link to brain, sleep, and MS or just food intolerances/vitamin deficiency. Does that make sense?

Re: Symptoms questions... Docs are "waiting to see"

Posted: Sun Dec 22, 2013 7:31 pm
by jimmylegs
Sleep-disordered breathing: Effects on brain structure and function (2013)
http://www.sciencedirect.com/science/ar ... 4813001262
"Although the prevalence of thiamine deficiency in OSA has not been established, the collective findings suggest evaluation of thiamine and magnesium levels, with aggressive intervention to correct such deficiencies for neuroprotection against the substantial injury in the syndrome."

Re: Symptoms questions... Docs are "waiting to see"

Posted: Tue Jan 14, 2014 6:00 am
by cardarlinow
Hey.. just a little update.

I am now on Iron and Vitamin C three times daily. It did not help with the tingles, I have still gotten them sporadically and just lasting a few seconds here and there in one spot and then another. I was getting very tired and dizzy in the afternoon. So much that I needed a nap. I emailed my doctor two weeks ago to ask if I should try the Vitamin B since I wasn't feeling 100 percent yet still. So I started the B complex last week... I FEEL AMAZING! MY energy is up.. I am no longer dizzy in the afternoons I don't feel the need for a nap. I can accomplish a lot. And I'm sleeping at night... not 100 percent back to normal with sleep but I am sleeping better. I also bought some magnesium but have not been taking it all the time. I wanted to ask her what my levels were for that before I start taking it routinely. I'm very worried about overdosing on vitamins. I know that too much of a good thing can be a bad thing. So.. with that said.. I still have a few problems I'm facing.

It seems every time I bend over or try to sit up from laying position my ab muscles cramp up like a charlie horse. I didn't used to have this problem a few months back. And I was doing more exercise than I am now back then. I'm not sure if these types of cramps are normal.

Also, earlier this week I was out with my children and thought that I had "lost" one of them in an indoor soccer field. It was for a few seconds that I couldn't see them and I panicked. That panicky feeling you get with the adrenaline rush. And as soon as I resolved the issue ( found the child and carried on) my left thigh became very heavy and it was as if it was on the verge of not being able to carry my weight as I walked around. It lasted for about 5 minutes and then went away. I have been looking out for signs of narcolepsy as I have three out of four main symptoms. The one symptom I did not have was cataplexy. So I can not tell if this would be considered as cataplexy? Or if this could be the kind of muscle weakness that happens with MS. Its hard to pinpoint because every time I have a sensation.. it doesn't LAST. It goes away in a few seconds to a few minutes and it might pop up again in a few minutes, a few hours, or a few days. I don't know if that type of inconsistency is normal or typical of MS. It seems like when someone has an attack.. it usually lasts a long time. Thoughts?

Re: Symptoms questions... Docs are "waiting to see"

Posted: Tue Jan 14, 2014 7:16 am
by jimmylegs
minerals are tough to balance. while your ferritin status will be better, your magnesium status (which may originally have been poor) may have been affected leading to the muscle cramping and spasming issues. more exercise would play into this dynamic as well. stress (physical or psychological) can also cause magnesium depletion. on the flip side, the b vitamins are good on their own and also help you use whatever magnesium you DO have in your system.
hope you can get some more tests soon! it's not smart to take supplements, especially when you have an array of symptoms, without good background information.

Re: Symptoms questions... Docs are "waiting to see"

Posted: Tue Jan 14, 2014 5:39 pm
by cardarlinow
The supplements do worry me. I feel fine right now.. in fact great. But I am hesitant to tell my doctor that because I'm afraid they will treat it as a bandaid and send me on my way. I know she is expecting my tinglings and numbness and everything to be explained by lack of nutrients. I am holding strong on being gluten free because obviously somewhere I have a malabsorption problem and celiac disease is the only thing I can piece together that makes sense. No one seems to want to test me again or investigate any further for it ( endoscopy/biopsy of small intestine) to confirm.

When you said that exercise played a roll... did you mean the lack of exercise lately has played a roll in the cramping. She has mentioned nothing about the magnesium levels. Do you think I should take those? I was thinking I wanted to wait at least 2 weeks to see how the added vitamin B's were making me feel. I am sure that I will have another blood draw in 3 months. She wants to check my wbc to make sure its come down. Right now the MONOs were high.

Re: Symptoms questions... Docs are "waiting to see"

Posted: Tue Jan 14, 2014 5:56 pm
by jimmylegs
i know celiacs end up with nutrient deficiencies, notably zinc, and i strongly suspect that nutrients play a causal role in celiac disease. gluten free status improves nutrient status but not necessarily enough - especially if people just remove gluten without addressing other faulty dietary habits.

exercise can play a role in muscle spasms due to nutrient depletion and associated electrolyte issues.

as for magnesium. what form is your mag supplement again? mag glycinate? I'd always rather have mineral test results in hand first BUT, given how you are feeling after iron supplementation, it might be an idea to take a break from iron and do 600mg mag glycinate per day for a week. along with the b vitamins, that could be a powerful energy combo. esp. if iron hasn't been doing the trick.

remind me if you've had a zinc test done at all?

Re: Symptoms questions... Docs are "waiting to see"

Posted: Tue Jan 14, 2014 7:43 pm
by cardarlinow
The magnesium is Magnesium Oxide ( 400mg)

My iron levels were at 10 I believe.. Maybe 11.. I can't remember. I'll have to go back and look. So my doctor was mostly concerned about this. But most of my symptoms didn't go away until I started the B's. I still have some symptoms but they are very mild and here and there. Is that normal? When I talk with people about MS, it seems their attacks last for days but thats not really the case with me.

I did ask my doctor about zinc levels and if she tested them.. she said she did and they were normal. But she still has not given me any results. So I will need to ask those questions when I need to see her next time. She also stated my B's were "normal" and then corrected herself that if we were talking neurologically, then they were low ( under 500) So I really feel confused and completely lost on this.

I also pulled a muscle ( I think) twice this month in my back. Literally from doing nothing. Once I just woke up that way. and the second time I was changing my sons diaper. So doesn't quite make sense as to why I pulled a muscle. It hurts every time I turn my head to look from either side. But more pain when I turn left. I think I might see a chiropractor.

Re: Symptoms questions... Docs are "waiting to see"

Posted: Tue Jan 14, 2014 8:08 pm
by jimmylegs
arg magnesium oxide is no good ... unless you're backed up from taking iron!!!
absorption is way better from magnesium glycinate. that way you can take a higher daily dose without GI consequences.
ms varies from person to person. I can't really advise on nuances of relapses b/c I haven't had anything I would call a real relapse yet. time will tell!
do see if you can get the zinc results. as for the b levels - re b12 specifically: the standard assessments are associated with hematological criteria (ie to be deficient they have to be able to SEE the blood cells are physically enlarged). you only have to have levels over about 250 to meet those criteria. once you get into cognitive criteria (which hardly anybody knows about/bothers with) a 500 minimum level has been proposed.
wow that is a really low iron level. you want that up around 80 or 90.
i'll be interested to hear your zinc levels/units if you are able to get a copy for your files, or possibly even call in to her office for details.
magnesium is great for muscles - do see if you can get your hands on a better quality supplement. possibility: you could use up the mag oxide taking it every other day, and using the more absorbably mag glycinate form on in between days. couldn't hurt to give it a try before spending money on the chiropractor.

Re: Symptoms questions... Docs are "waiting to see"

Posted: Tue Jan 14, 2014 8:19 pm
by cardarlinow
I didn't know that about the GI with Mag.. and thats funny that you mention it because I had to triple down on my iron... which was No bueno for my bathroom habits ha ha! And then I noticed after taking the mag a few times that it just didn't seem to be a problem. But I didnt click it until you said something just now.

I will get it from her when I see her. I did ask in an email and she didn't give me specifics ( even though I specifically asked.. "Hey did you test for zinc and what was it?" She just said "it was normal."

Im assuming that you have a lesion and a confirmed diagnosis of MS. You stated you haven't had any relapses yet. How long has it been since you were diagnosed? And how many lesions? It just frustrates me that my doctor doesn't want to do anything right now ( as in another MRI of my spine and brain) because my symptoms are "not that bad."