I used to post here sometimes on the old forum. I was in the hospital when the forums crashed, and when I got home I wanted to come on and vent about what happened during that hospital stay, but the boards were down. And they stayed down.

I was just in the hospital again last week and am having a hard time getting back to normal.

I have a metabolic myopathy that they (metabolic doc, neuromuscular doc) think is mitochondrial. I get recurrent attacks of rhabdomyolysis, and also a lot of smaller attacks in between the big ones. I also have metabolic acidosis (type 2 renal tubular acidosis) that they were blaming on Topamax, but I stopped Topamax 2 months ago and my bicarb is still quite low (17-18), so it is my body's fault and not the Topamax. I get a lot of problems with pain, mood, nausea, and fatigue in the days/weeks following an episode of rhabdo, and so right now I am trying to get the docs to deal with those problems, too, rather than just the acute stuff when I am in the hospital.

I am supposed to go to Atlanta and see Dr Shoffner to get a second muscle biopsy. My first one was a frozen specimen, and they didn't really send any tissue for the mitochondrial tests at the time, either. They only sent it for light & electron microscopy and then a panel of several enzyme tests to look for some of the more common causes of rhabdo (CPT II, glycogen disorders). Then we were out of tissue, and it wasn't an ideal specimen to do the mito testing on, anyhow. So now I have to get a new biopsy with a fresh specimen and they will send it for mito testing, etc. However, I have an HMO and am in Wisconsin... and so we are trying to get the HMO to approve going to Atlanta for this test. There are only a couple of places in the country that do it.

Not much to say about what's happening this week. I am a grad student and am trying to get caught up from all of the stuff I missed while I was out last week. I basically go to school/work, then come home and crash. I really don't have the stamina to even be going to classes right now, but I am forcing myself to do it anyway so that I don't get farther behind. I am wondering, though, if it wouldn't be smarter to take a medical leave this semester. I don't want to take yet ANOTHER medical leave, though... At least I have a good disability insurance policy that I bought into before I got sick.

I am just sick of getting sick so damned often. I am frustrated with my body and am trying to just take it one day at a time and give myself the rest, hydration, and nutrition I need to climb out of this current episode of metabolic fog. For now I am going to keep struggling along with school and work, and try to let my body heal.