Originally Posted by Friedbrain

What is your infusion, and for what? Interesting.

I've only experienced the "can't lift my legs" symptom once, and I think it was during the time I was weaning off the high dose steroids. I remember literally picking up each leg with my arms and placing them up the next step. Awful.

I haven't seen a rheumatologist in years because I never found them to be helpful for me. Yes, I have a lot of symptoms but they never *treated* them. We'll see what my famdoc says about the Sjogren's when I see her. I've kind of simply tolerated the cold/numb fingers and toes, dry eyes and mouth, etc. over the years because it didn't have a huge "quality of life" impact. However, I've also been on steroids (the cortef) for 8 ys, and going off them might exacerbate all sorts of autoimmune probs, so who knows.

The thing about HE...or any of the autoantibodies.....is that I can't seem to find out how they directly wreck with my brain. In theory, if HE is caused by the TPO antibodies and is responsible for my neurological problems....then I should be able to find literature detailing how and where the TPO proteins are in the brain.....which I can't find. (same with Sjogren's-how do SSb antibodies affect neurological function?) So I don't understand the HOW.

Oh, the diet! Yes, well, over the years I have discovered what works for me and I've been really pretty happy to limit my eating to what works. My reaction to carbs was so extreme-I would get tachycardia or soooo sleepy-that just thinking about, say, ice cream can make me feel sleepy. So over the years, I worked out the diet that works for me. I start with a low-carb drink shake (NOT the normal diet drinks because they made me sleepy too! I look at the carb content vs protein content. The lower the carb content the better) and coffee (I drink a LOT-I guess that also helps me feel not so fatigued... self-medicating!). A few hours later, I have a low-carb bar (very few don't make me sleepy-I stick with the Zone Perfect bars). However, snacks like pretzels with cheese work, too. Carbs combined with fat and/or protein. For lunch, I had the SAME thing for years.....veggie quesadillas from the frozen section. For dinner I make my own quesadilla (or without the quesadilla.....just mix it up) with a frozen veggie/beans mix, chicken, cheese, and low-sugar Thai peanut sauce (some sauces are too sweet for me; there's only one I can use). I also strangely crave popcorn, but I use a LOT of oil and salt, so maybe I'm craving it because of a dietary need.

On this diet, I lost weight and felt great. I cannot eat "normally" without feeling like crud.

I use cheese for a lot of things. My dh tells me fat is bad, blahblahblah, but my total cholesterol is even below normal, with high good cholesterol. It is NOT my problem!

Please share your results when you get them!