THanks so much Annie!!
That is really interesting that your dr said a lot of MGers have that sensation- that describes mine pretty well- my face almost feels numb after I smile or laugh for a bit, and it won't reallly be able to move.. It feels like vibration or asleep sensation.. My shoulders especially get this when I walk around swinging my arms (which I think we should be able to do, but this past week proved to be too much for my body, so I had to walk funny with both arms still to my sides and a straight face)!

My vitamin D levels were 21, so i have been taking supplements for a few weeks now, along with attempting to get more sun too! As far as celiac.. They tested my antibodies (when this all began, and I was having GI issues and feeling weak), but I had already been gluten free for a week or so, they were negative, then about 10 days after being gluten free had endoscopy/coloscopy (its really been a fun year), that besides gastritis and esphagitis was normal.. though I think only one biopsy of small intestines was taken... reading that neuro symptoms can also be a part of celiac, i cut all gluten out of my diet- no processed foods at all, not even gluten free ones, no caisen and no soy... It seemed to calm down the GI system a little bit.. I've been gluten free- very strict about it for almost 5 months or so now, just in case my neuro symptoms were from that! It's really not hard to do, except in the hospital setting!! I"m starving!!! they don't have a lot of options for gluten free.. haha, I had my hubby sneak me in some better food!
Thanks again so much for your help! I hope tomorrow brings even more improvement! I am getting very excited to think whatever I have is manageable!!! I can't imagine not worsening day after day after day!!!!

One note about the GF/Celiac stuff - the tests for Celiac will only pick up Stage III or higher damage, so you could very well have Celiac and it won't "show up". There is currently no test for Gluten Sensitivity, but the symptoms (and effects of continuing to eat gluten) are the same.

The fact that your Vitamin D levels are so low certainly would seem to indicate something going on there. If you go COMPLETELY GF, you should see an improvement within a few months. And you have to stay GF for life.

You will want to give serious consideration to implementing a GF diet for your entire household; while many problems caused by undiagnosed CD can be reversed once a GF diet is started, many others ARE NOT REVERSIBLE (MG, for example).

That's not to say that MG is CAUSED by untreated CD, because the two are entirely separate conditions, and many people with MG do not have CD.

However, if a person is gluten sensitive and doesn't know it, their immune system will go for many years without working at peak capacity.

I'm so glad that you finally have an answer for what's been "ailing" you for so long; it's going to be challenging with young children around the house, but it is manageable. Don't be afraid to ask for help, and don't overexert yourself - you could find yourself in the hospital again (or worse).

There are many medications that are absolutely contraindicated with MG - be sure that your doctors are aware of these (your dentist, too). You may want to get a MedicAlert bracelet as well, just in case.

The folks on this forum are the absolute best - they're always here to answer any questions you may have, or to put an arm around your shoulder on the days when you need to have a "pity party" ('cuz really, people who don't have this disease don't understand how we FEEL most of the time).

Thanks Teresa!!! I appreciate it!
Yea, i have been gluten free now for about 5 months I think... The bowel issues (what I think preceeded the rest of this mess) have improved some, but not back to "normal" for me.. I have dedicated pans etc that I use in the kitchen to avoid any cross contamination, and my kids and hubby eat mostly gluten free now too! I have two familiy members (aunt and cousin) that are possibly celiac too.. so I will just stay on this diet (though around Christmas I'd really like to indulge in my traditional cookies) until I start improving GI and Neuro wise, and then may test the waters someday, but for now not worth the risk!

As far as the IVIG goes, I felt like I was feeling a little better yesterday, but then the side effects of the IVIG seemed to kind of take over- flu like symptoms, pretty bad headache etc, been taking tylenol and motrin but temp is still getting up to 100, so i just kind of feel all over weak again.. though I think improved, but my right eyelid is droopy again, though not as bad.. humm... Wish I had a few more answers! I will be here in the hospital at least another night- LP done today, EEG/evoked potentials tomorrow.. Hopefully the body aches and IVIG side effects will wear off and hopefully the benefits will start really showing up!

"Glutino" perfect pie crust mix or "Beyond The Grain" sugar cookie mix are great for cookies, pie crusts, lefse (yeah, I'm Norwegian) and all sorts of recipes.

Has anyone ever checked your immunoglobulins? You know, IgA, IgG, etc.

If you have a low IgA, a celiac antibody test can look normal when it's not (false negative).

If you have a low IgG, it's the same with the MG AChR antibody tests. I believe MuSK is IgG too.

Some people with certain low Ig's have problems with infection. Maybe yours are fine but it's worth checking.

Thanks Annie for the gluten recommendations!!!! I stopped ALL processed foods even the gluten free ones for months, but now I induldge in them, as I just was always too hungry eating nothing but unprocessed foods Have you tried the Pamelas chocolate chunk cookie mix (in the purple bag) YUMM!!

Funny you mention the antibody issue.. I have never mounted antibodies- When I was in school I had to get titers to a lot of illnesses and vaccines checked, and they were all negative, despite having the illness (like chicken pox) or vaccine.. I actually got the MMR and varicella vaccine multiple times and the titers continued to be negative.. I mentioned that to the dr's here on the day I got admitted.. for fear that that might alter all these fancy antibody results, they are running an immune panel on me.. I have never been one to get sick easily though. In fact everyone around me can get sick and I usually will stay well (though I am a little OCD about the hand washing, so maybe that's the cause) .. SO that immune panel is pending along with everything else..
I felt like I was doing better, though still feeling icky from the whole IVIG meningitis issue, but tonight my fingers feel weaker (maybe its due to cranking the heat up since I have chills) ugh.. this whole diagnositic uncertainty isn't very fun.. It's so much easier to know how to handle and how to plan the future when you have an idea of what the diagnosis is... thanks agian so much for your help!

Anyone have an idea who the best MG neurologist in D.C. Metro area is? I'm on 2500 mg of Cellcept per day. I joined the MG life in 2005. I had my MG crisis in 2005.

Just wanted to let you know that I also have both small fiber neuropathy and MG. I was diagnosed with small fiber neuropathy less than a year before MG. And I JUST noticed my eyelids are starting to droop exactly the way you explained yours....so very glad to get that information. At first I thought I must be getting a really bad eyebrow wax job, then I couldn't figure out where the area went where the eye makeup goes, then I kept thinking my eyes looked funny; but because it wasn't what I'd seen pictures of I never thought MG.

My eyes are the last of the symptoms to show up, I have generalized. I didn't think this was going to happen, but it's almost like my eyebrows are touching my eyelashes now. It sucks!

I was in the hospital in July for 8 days in a crisis, though I was not vented. It sucked. I've never been so weak in my life. Looking back, the heat probably contributed plus I'd missed some IVIG. My MG is managed with IVIG and Mestinon. I get IVIG every other week for 2 days.

Careful with that IVIG rate; you are describing signs of aseptic meningitis. Hopefully it won't get worse; it is just treated with pain meds and fluids until it passes anyway. It is caused by them infusing it too fast usually.