Originally Posted by Friedbrain

Susie,
Thank you so much for taking the time to share your long abbreviated story. Like you said, people with complicated health issues DO have long stories lol

But we definitely have overlap. I'm fascinated by your story in particular because, although I share health problems with many people, very few have the neurological involvement that I've had. Specifically, my initial symptoms were loss of balance and inability to move my eyes horizontally. One evening, I was driving home and my eyes were moving sluggishly side to side, like I was drunk (wasn't). The next morning, I woke up and walked into a wall. Within 24 hrs, I was seeing double (soon diagnosed as 6th nerve palsy). When I was hospitalized a week later, the nurses thought I was blind because I had to hold the wall to walk because I had NO balance. A month later, I had seizures in the middle of the night and was unconscious and seizing the entire way to the hospital. For the ten days of testing (including MRIs, and later, lumbar punctures), they found no cause. I also had trouble swallowing (in and out of the hosptial), couldn't urinate while in the hospital....peripheral problems that stumped them. Anyway, they gave me high dose steroids IV (solumedrol) in the hospital the second time, and I slowly decreased the steroids once I got out. My neurological problems (balance/eye movement/swallowing) improved on the steroids, started to worsen again at one point when I made another decrease so my neuro had me increase and slow the taper even more.

My main problem, I think, is that my health problems are not constantly with me. Early on, before the medication helped stabilize my health (several months), I noticed that they were related to my monthly cycle: vision/balance problems are more likely to strike around ovulation; my seizures occur during the night in the week before my period (called catamenial epilepsy...maybe related to proportionally greater estrogen, which is excitatory, vs progesterone (which is decreasing at this time), which is inhibitory in the brain). And then, stress exacerbates the symptoms, whereas if things are calm, I'm often fine. That complicates it for doctors, and they don't like that. I have a PhD in a medical science field, so do my own research on this when I'm motivated (ie having problems; when things are ok, I take a break worrying about it). I track my symptoms and try to understand my "triggers".

For example, even on two anti-seizure medications, I still often have problems sleeping the week before my period. So when I had an in-hospital two-day EEG to detect abnormal brain activity years ago and it was during what I consider my "ok" time of the month, it detected nothing. When a new doc ordered a sleep study last month, I was able to schedule it a month in advance for a night when I thought I might be vulnerable.....and sure enough, I had sleep problems!

I did have rashes many years ago, so was close to a lupus diagnosis with the autoantibodies; told I had "Antiphospholipid Syndrome" or something like that. I've also had problems with blue/numb fingers, which come and go (particularly with stress); and dry eyes/mouth, which is Sjogren's Syndrome (just had another SSb positive result, so will be talking to my new doc about this at the end of the month).

Over the last year (I went thru a lot of stress last year, and my health seemed to take another dive, with new problems cropping up), I've had new severe/strange allergic symptoms of no known cause. Several times, I woke up with a puffy face. Depending on severity, it was my eyes and lips, and one time even the skin around my lips (angiodema; I looked it up). I also was experiencing severe rashing on the front of my trunk at night. I tried going to the doc once when my face was swollen but by the time I got in (~10am), the swelling was down so not much for her to say. I did take pics of my trunk; wish I had taken pics of my face. These things haven't happened for about 6 mo tho, so not a major concern right now.

I was trying to find my TPO value, but can't right now. I have a gigantic binder with all my test info over the years; need to organize it better so I can find relevant results!!!

My biggest concerns are two-fold: one, that as soon as stress hits, I crumble. The symptoms resemble dysautonomia in some ways, because the problems are both central and peripheral. And the seizures and sleeping problems that happen in the middle of the night, making me afraid of going to sleep sometimes.

I'm not working right now, but I'm afraid that as soon as I do, the problems will come back. And now that the NewEndo wants to take me off the steroid...! Two moves ago, new docs changed my meds around (both neuro and endo) and I started having seizures again. Once I start having seizures, I lose my driver's license for a period of time.....which is devastating. I do NOT want that to happen again!!

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!