Terrified about a possible diagnosis

A forum dedicated to the younger people living with MS reflecting their unique concerns.

Re: Terrified about a possible diagnosis

Postby sandy05 » Thu Jun 21, 2012 9:44 pm

Im very surprised to hear that so many others have had no lesions with the way the neurologist talked about it. He made it clear that if it was clean we had to look for other things like nerve damage and completely rule out MS. But hearing it from someone who has been there, it is definitely something to keep in mind in case everything comes out clean and I still have symptoms.

http://www.vitacost.com/centrum-multivi ... supplement
Right now im taking centrum multivitamin/multimineral supplement along with the vit D 50,000 IU D2 caps once a week. My new blood work confirmed that my kidneys are okay and that it is not lupus. However, my esr and crp levels are high indicating inflammation in the body. The neurologist said some MS patients have normal levels and others have high and it varies. He told me it could mean an autoimmune disease (MS), a tumor, or nothing and not to worry (ha).

Just waiting on the mri on monday to go from there. I've been using warm water instead of hot like I usually do and trying not to stress out. Im thinking of taking a b12 supplement too to raise the levels like you suggested. Im finding the more I physically exert myself the more my leg gets crazy and starts shaking. So for now Im taking it easy. Thank you both again, I know I keep saying it but I've honestly had no one to talk to about this and it really helps to hear from people who have been there. My family, despite seeing my body shake and the test results as well as hearing what the neurologist said, keep telling me it is all in my head. Thanks again, hope you are both doing well.
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Re: Terrified about a possible diagnosis

Postby jimmylegs » Sat Jun 23, 2012 5:15 am

heya sandy, i had a look at the centrum product and there isn't enough info to assess it properly. none of the forms are listed, so it's hard to say if the amounts given are elemental or not, or whether the form is the best one.

for example i can't comment on the form of vit E provided, but it says 30 IU and those are likely to be either a synthetic or natural form of alpha tocopherol. supplementing just one of the E8 complex has been shown to disrupt natural distribution of vit E fractions, suppressing things like gamma tocopherol which has tumor suppressant action. so, whole food sources are best, and after that, natural source E8 complex with all 4 tocopherols and all 4 tocotrienols.

also D2 is ergocalciferol not cholecalciferol. it's plant vitamin D2 which your body has to convert into D3. vitamin D3 is more bioavailable to humans and has a better effect on your serum levels.

also when taking high dose d3 it should be balanced carefully with calcium, magnesium, and zinc. the amounts in the centrum product are negligible. (and that counts in general too, not just in relation to d3 - they might keep a perfectly healthy person topped up, but they can't get someone who's sick back on track). further, zinc needs to be balanced against copper. so if you take a zinc supplement ensure it has a little copper in the mix. personally, i take a daily 50mg zinc citrate pill. it delivers 15mg elemental zinc, and is balanced with 2mg copper.

if you choose a b12 supplement, see if you can find a sublingual one using methylcobalamin (rather than cyanocobalamin).
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Re: Terrified about a possible diagnosis

Postby sandy05 » Wed Jun 27, 2012 10:16 pm

Thank you so much for all your help. So I had both MRI's on Monday and they both came out clean. The neurologist has completely ruled out MS. He said with my symptoms it's highly unlikely to have a clean scan at this point. I feel extremely relieved, however my symptoms haven't gone away. I still wake up to the left side of my body shaking and feel sharp pain in my left hand and foot. My vision is still blurring and Im finding it extremely difficult to study. He wants me to wait it out for a month and see if it goes away on its own. Only then will he do the EMG, unless my symptoms get worse. I don't really know where to go from here. I feel great that he has ruled out MS but Im still having these symptoms with no instructions on how to get rid of them. Im feeling extremely frustrated. Only time will tell I suppose, and until then thanks again for everything you guys have been a big help :)
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Re: Terrified about a possible diagnosis

Postby jimmylegs » Thu Jun 28, 2012 1:22 pm

hi sandy :) that's what we're here for! see if you can get the docs to give you a serum zinc test and a serum magnesium test, then bring the results here. i am willing to be they would be telling and could give us some ideas for how to go forward. don't put up with feeling like crap if there's something that can be done. if they won't give you the tests, then you can consider starting on some diet mods and a more therapeutic supplement regimen. if you send me a three day diet diary i can look for problem spots and give you some tips. sucks not being able to study :S
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Re: Terrified about a possible diagnosis

Postby sandy05 » Thu Aug 02, 2012 11:42 pm

Hey guys, Im sorry to bother you but Im back again and this time more frustrated. I have been going through these symptoms for over 5 months now and with no answers from my primary doc or neurologist. The numbness has spread to my face and I have been having frequent heart palpitations. I don't know if these are MS related or something else, but both doctors have made me feel it is all in my head. How much can I blame on stress alone? I know my body and Im not a hypochondriac, I know something is not right. But I honestly don't know where to turn anymore. You guys have said that it is possible to have MS with clean MRI's. I have been researching and keep reading that it is extremely rare. Deep down I still think it's MS. I've been poked and prodded and checked for lupus and other autoimmune diseases. The only thing that ruled out MS was the lack of lesions on the MRI. Other than that, all the symptoms are still. There is a lot of inflammation in my body, the numbness and shaking, fatigue, feeling drained, and a lot of times I feel like something is crawling on my body (my arms and legs mostly) and look to find nothing there. Im extremely stressed out and don't know what to do at this point. Any advice? If the neurologist ruled out MS does that mean Im just nuts and it's something else, or could he be wrong? Please help.
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