Re: Darla, also ? abt. collagenous colitis?

[Guest guest]

Darla,

You know, I've kind of avoided thinking about mito and me, but something you wrote made me think again about the possibility. As you know, Asher has mito - oxphos defect complex III and possible complex I. I have a primary immune deficiency and take gamma globulin. Other than that, I seem "fine" sort of. My thyroid is deficient and I need more sleep than the "average" person - say, 9-10 hrs. a night and sometimes a nap. I've always thought that was due to the primary immune deficiency, but something you mentioned made me wonder (as well as the fact that Asher has mito). After Asher's birth, I started to have weird trouble with my eyes. I couldn't turn my head and focus my eyes- it felt as if I'd had a drink of some type of alcohol - you know, how blurry everything gets when you turn your head. And my eyes or somewhere above my eyes would hurt for long periods of time when I kept my eyes open. I would have to close them to feel better. I saw an opthalmologist eventually, thinking maybe I needed glasses and they didn't find any problems. I just figured it was from fatigue. It has mostly stopped but from time to time it comes back...I'm pretty healthy other than those things - I'm a runner and I guess I've ruled out mito for me b/c I'm able to run long distances (now only about 6 miles - used to do marathons but that was before children) without being more tired than expected.

My other question is about collagenous colitis (sp.?)? My mother has all sorts of "autoimmune problems", and has been dx with an atypical form of lupus (sounds familiar, huh?). Probably her most difficult problems is the collagenous colitis where her colon literally is making a collagen covering over the absorbent tissue and she has a hard time eating any types of food. she is on almost completely baby food or extremely bland food. she is okay with this and has been to Mayo and they are helping her, but I was curious if any one has heard of this symptom occuring with mito. I know Shoffner's doing a genetic sequencing on Asher's mito so we might have some answers in terms of the genetic connection.... I think.

Any thoughts?

Anne R