Good Appointment With Neuro Today
 

Hey everbody,
I haven't posted in a while but I am always around reading your posts and keeping everyone in my prayers.

I saw my Neuro today (The greatest Neuro in the world to me :D ) and I am continuing to move in the right direction since my relapse last year. We are going to try and stretch out my IVIG infusions from once a month to once every five weeks! That is good news for me as I was stuck on the once every two week infusions for quite a long time. I am finally getting to the point where I am not sitting at the door counting down the minutes until my Home Nurse (the greatest Nurse in the world to me :D) pulls up in the driveway with my "pick me up off the floor juice". I could probably go 6 weeks but I'll just see how 5 weeks go first. I have also been able to reduce my mestinon as well.

I have changed my lifestyle and diet so I am sure that has helped as I feel better overall and other health ailments I have are also improving. Anyway, I Just wanted to post something positive. Hopefully it will give others hope that there are times when MG does give your body a little break and retreats so that life isn't always full of weakness and despair. It's always here with me and has been for 16 years but I am happy that it's presence isn't so overpowering right now. :)

Blessings,
Shari

hey, you must have the same neuro and home nurse I do!!!!

nice to hear someone else doing well.

Great news Shari!! Feels good to feel good, huh?

Sue

Shari, did you ever get tested for Celiac Disease? I was reading your posts from last December (I was doing a search for something, and one of your threads came up). I just got diagnosed with MG, but I am wondering if my sister might have had an undiagnosed case of MG (she passed away in December, 2008). Many of the things that you were experiencing sounded like what my sister went through the last year of her life - she got really bad when she started taking meds for Bipolar Disorder. Unfortunately, she was extremely overweight, so whenever she complained about being out of breath, doctors would tell her to lose weight. All of her tests came back negative for the "standard" things they look for in the ER.....

When she was having these problems, our youngest daughter had just been diagnosed with Celiac Disease, and I subsequently found out that I had it as well (mine was skin-related; my blood tests came back negative). I am convinced that my sister had some form of gluten sensitivity, but once I started reading about MG earlier this year, everything just seemed to "fit" what she was experiencing. I am wondering if the medications that she was on for BP might not have made things worse without anyone realizing it - all of her doctors said that "no one" had the kind of side effects that she was having. She eventually developed a Pulmonary Embolism that took her life (she literally couldn't walk from one room to another without getting out of breath).

Of course, MG NEVER would have entered anyone's mind, so I'm not blaming anyone for it, but I thought I would let you know about my sister's experience with that class of medications. I also wanted to encourage you to look into the possibility of Celiac Disease/Gluten Sensitivity as the cause of some of your other symptoms - if you have one AI condition, you are at a much higher risk of having another one.

There is information about this on the NT forums - one of the threads that they refer us to is http://neurotalk.psychcentral.com/post8767-2.html. You had mentioned trying to be on a more vegetarian-style diet; if you have CD/GS, you will need to be very careful to avoid the gluten-containing grains. However, our family has found that we actually are healthier on a "normal" diet with meat and dairy included (we have to eat gluten-free of course!).

When I started on a GF diet, my arthritis got better within 24 hours (haven't had a problem since), my rashes started clearing up, and I had more energy than when I was a teenager. I also started sleeping through the night and waking up refreshed (I still snore, though!). People with CD/GS have problems with malabsorption that usually clear up within 1-2 years of starting a GF diet. Since you have a Vitamin D deficiency, it certainly can't hurt to try a GF diet for a while - be sure and get tested for CD first, though.