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Old 11-16-2012, 10:39 PM
bny806 bny806 is offline
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Join Date: Nov 2011
Posts: 576
10 yr Member
bny806 bny806 is offline
Member
 
Join Date: Nov 2011
Posts: 576
10 yr Member
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Thanks so much Annie

As far as the nutritional deficencies - that's a big YES.. they tested me a ton for that.. and the funny thing was I was actually TOXIC on vitamin B6.. since I have MTHFR.. I was told to take aspirin, folic acid, b12 and b6.. well I was just taking one drug store pill a day (for almost 4 years).. turns out the ones they sell at the drug store are waaaay too much B6.. i had stopped taking it 10 days before the test and it was like triple the normal- ugh, i felt so stupid for taking it for so long ! My other tests were good.. since all this started with wicked GI symptoms, i was initially admitted into the hospital for generalized weakness and GI issues.. I had bad left upper quadrant pain with it too.. I coiuld barely put one foot in front of the other, and I couldn't make my face move - the crying or smiling face.. I remember crying since I couldnt 'make the crying face haha
They did the colonoscopy/endoscopy several weeks after I was gluten free, as well as the blood work.. and it was all normal (except gastritis and esophagitis).. I thought I had the immune panel run in patient in the hospital with my neuro admission..I swore I saw the computer screen with the results and they were all flagged as abnormal (but couldn't find them later, and my neuro doesnt' talk to me a lot).. I had an IgA panel run one time after that, but was on IVIG and it was normal (like a week after IVIG)

My achr modulating test was 3 weeks and a few days after my last IVIG..I would think that it wouldn't be false positive from IVIG since they hoepfully wouldn't take it from mysthenia patients! what do you think??

I think I have most of the gluten out of my diet.. I had read about cosmetics and it was in some of my chapsticks!! But, I am very cautious (though my kids eat gluten and I'm sure i get some by kissing on them).. and I NEVER EVER eat out at all - lots of cooking at home!

My GI issues got better after starting the gluten free diet, by a lot, but they didnt;' resolve until my first round of IVIG... though I also had antibiotics for my aspetic meningitis (they wanted to make sure it was aseptic first).. at the same time - so who knows..

Does being dehydrated affect the repetitive stim? I think they are doing SFEMG as well. I just get nervous anytime a new dr examins me.. I am afraid that they will find something awful.. and give me a death sentence.. i truely have PTSD from my first dr's appointment from this all!
thanks Annie!
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