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!

B-R-E-A-T-H-E.

PTSD is something that needs addressing too. You can't "wish" your way out of it. There is a new "touch" therapy that works really well.

First, get your medical records! Don't guess at what those Ig results were! If you have an immunodeficiency, that needs to be looked at by a specialist. Possibly a geneticist.

It's hard to say about the AChR modulating test being affected so long after having IVIG. It's more important that you have the IVIG since you don't do well without it. Kind of silly to go off of it for a stupid test. Maybe your neuro could redo it in 6 months to see if it's gone up.

Staying hydrated and warm HELPS with the EMG, RNS and SFEMG. Geez, you need to really relax about this whole thing. And I do have PTSD from numerous doctoring debacles so I do get how doctoring can make you hyper just thinking about it. Being able to reassure yourself and stay calm is going to help you get through the test anyway. Do you meditate? Can you focus on something you love during the test?

Don't take Benadryl within 48 hours of the test. It does the opposite of Mestinon and could affect the test.

Gastritis can be from more than one cause. Did they check you for H-Pylori? Are you taking any antacids or acid blockers? Those can cause it too. Stomach acid is a good thing and as you age, you lose it. A lack of it can cause gastritis too. And the symptoms of not enough and too much stomach acid are so similar. Both of those conditions, gastritis and esophagitis, can open you up for cancer. So it is important to see a gastroenterologist in an attempt to figure that out. Or a primary doctor first.

I'm sure the tests will go great. It'll be what it'll be. You're already getting good care and that's half the battle.

Annie

Thanks Annie.. I know.. I do fine most of the time, but give me a Dr's appointment (neuros only), and I get wigged out really quickly.. I think being in that Dr's office all alone on a friday with a 3 month old being told it could be ALS... Ok see ya monday for the EMG.. did a mental number on me... I did take some anxiety meds occasionally for a few months during those few months of decline.. but I really didn't like doing that.. but after so many dr's told me I was so anxious, I began to think - maybe my symptoms are all just from anxiety haha- i wish.. No, I don't meditate, and probably should.. I used to do yoga.. and the best stress relief was running, or hiking in the mountains.. I am a tightly wound - used to be energetic person, so I think when I have this built up mental energy - not being able to physically release it, builds up.. schedule a dr's apt with that = freak out mode..

Sometimes I'm able to tell myself it is what it is, i can't change it.. and then I think of my kids, and how much I want to be here, and do things with them, then the worry really sets in.. but I know it doesn't help a thing , worry.. but still sometimes my mind gets the best of me..

I have been checked for H pylori- it was negative.. they put me on H2 blockers after the endoscopy..I took them for a while, and then just stopped as I felt I had so many meds coming at me, and the neuro symptoms started and I had no idea what the cause was, so I backed off - since being gluten free I don't have the esophagitis I used to feel.. though if i do get a hold of gluten, i get the worse LUQ pain.. I can tell when i accidently ingest it now..

I will try to calm down.. I think also trying to be strong for my family and never being able to release that mental energy, since no one can really understand anyways.. builds up.. most of my friends are stressed out about shopping for their vacations - ha.. so it's hard to relate sometimes.

Thanks again - I will hydrate hydrate hydrate.. and pray that my results give us answers, and good ones with good treatments! It's been a year since my last EMG/NCV.. but never had SFEMG or repetitive stim..