fitzroy

Yup, I can relate all too well.

Have they done a muscle biopsy on you yet?

I've dropped a large response in the forum. The muscle biopsy is deferred as much on my side as lack of clarity on what we are looking for. I'm not interested in diagnostic processes that don't progress treatment at this stage. I've put a hold on new explorations until next year. If the clinical stuff increases, it might provide a better basis for the smart folks.

Hi. I caught up on some of your older threads and it sounds like you've decided to focus more on the quality of your life rather than hunting down a firm diagnosis. Just curious though, did you ever get that muscle biopsy? What has got the doctors thinking mito disease at this point? I hope you don't mind my questions. Thanks.

No treatment. I had 6 months of IVIg 2 years ago, but developed cutaneous Lupus, and looked like an alien covered in weeping sores!
I have had no PT, but have been very very active. Walked and walked and walked. It was weird, but i found when trying to dodge a car that I could run better than I walked. It used different muscles and springing off with each step when running, was easier than walking. So like Forest Gump I started running.........Run Forest Run bcame Run Aly Run. I started improving slowly and in Feb my spasticity etc was almost back to normal My hip wealness has now pretty much gone. I can run up stairs, but Boy have I worked hard. I still have a slightly slappy foot and still get more fatigued walking than running.......?

Oh, and I should add that we've had one of the largest single day rain events in Victoria for ages last week. It bucketed down. I love storms.

I haven't used the visitor messaging that much, but I guess it's a pseudo PM. I'm good. I have problems with my hands and have started working with a hand therapist that's associated with the hand surgery unit at my hospital. The assumption is that there's something central happening but ill defined. I'm learning what calls it out and what doesn't. Helps with daily life. For example, I've been making more pasta from scratch. Good exercise. But I lose it most of the time and it takes effort to drag it out for cutting. Still, I love cooking. And I'll retain my knife skills as long as I can.

Otherwise, the rest of my arthritic issues are slowly improving and I might actually try to return to work next month. It's been 18 months. Being able to walk with relative ease is a relief.

Hey Fitz.
Things are good. Still able to do all things on my own. (taking a bit longer, but that's ok)
When I'm not able to hold my own beer, we're in trouble. LOL

Hope things are good with you.

Our weather is more consistant with summer pretty much here, so plan on working on the tan more, and doing more outdoors. (camping, patio, park...)

Cheers,
Casey