Liquid diet

[Guest guest]

Hi, I'm home. I went in on Tuesday because my blood sugars were all

over the place and I was having more trouble walking. I got a pretty

thorough neuro workup to rule out all kinds of scary things like

tumors and ALS. Well, thankfully, my MRI was normal. Basically my

neuro diagnosis is " hypotonia and pathological hyperreflexia and

multifactorial movement disorder, secondary to metabolic disorder "

which, loosely translated, means " You walk funny and we don't know

why, but it's probably because you have mito. " So they fitted me for

a walker, shrugged, and scheduled a follow-up in a few months. They

did do a MRS so hopefully we may get some answers there.

Well, we found out why my blood sugars are all over the place. I

have gastroparesis. They did a gastric emptying study and after 1

hour I had only emptied 4%. They had me get up and move around and

they finally gave up at 3 hours. I watched the whole tape of " The

Green Mile " , which I've wanted to see, so it wasn't a total loss. My

swallowing is a problem too but they couldn't schedule the swallow

eval till next week so I'm having it done closer to home. Thin

liquids are more of a problem but whatever I drink, I need to rest in

between sips. So, now I'm on a liquid diet, ensure for nutrition, 4-6

oz every 1/2 to 1 hour. Sheesh. How do other people manage that and

still have a life? I'm going to a seminar next week, a place that

has fabulous food, and I'll have to sit there drinking " old lady

juice? " It's bad enough that I'm using a walker or a scooter and

I'll be with people that I was out working with in January. How do I

explain that for the " short version? "

My nutrition turns out to be poor. I'm a fat starving person. I'm

trying to be positive- this is kind of like slimfast, a

very...intense... slimfast.

My GI has just about jumped ship. The metabolism doc got in touch

with him, looking for recommendations, and apparently dysmotility in

folks with mito is so complicated that he recommend I go to a

subspecialist. So I'll be seen by the same doctor that goes

to. Nothing like Family Medicine!

Does anyone know where I can get a list of what is considered a

liquid? They told me cream of wheat is liquid but oatmeal isn't.

How about baby food oatmeal? Does it work if you chew/suck on food

and then spit it out? (sorry for the visual)

Thanks guys

Heidi