Days 2 & 3 - September 1 & 2

No news is good news.

There isn't much new to report. The sites of the first injections are doing well. They were still very red yesterday. The redness is gone, hard lumps have formed under the spots where the needles went in and they are still tender, if I push on them.

Yesterday, I had another ekg. Heart problems are very common with myotonic dystrophy patients, so I'm going to have a lot of ekgs throughout the rest of the study. They need to make sure the medicine is not affecting the patient's heart. I also had to give a urine sample and more blood.

This is going to be the protocol for most of my other visits.: ekg, samples, dosing and home.

Yesterday, when I was in the hospital, right after I had woken up, I had some brief moments of muscle tingling in my legs. I didn't notice it and wasn't looking for any physical reaction to the medication. I did notice, when it happened a third time and was powerful enough to make the biopsy site start throbbing a bit. It wasn't painful. I don't know if this was a result of the meds or not, but I thought some might be interested since this is not a common muscle experience in my body. I mentioned it to Dr. Johnson, but like I've said, he's not allowed to offer opinions. I tried to stand on my tip-toes this morning, while I was getting ready and even though I was able to with both feet, I still couldn't do it with my left foot alone and my calves still cramped when I did it with both feet.

Yesterday, I went to lunch and did a tiny bit of shopping, but I didn't really feel very good and I was very tired. I don't think it has anything to do with the medicine. We have some extra stress in our lives right now, I had two very poor nights of sleep (with the late plane travel and the night spent in the hospital). And, I had all those blood draws.

I did find out that due to the amount of bleeding I had from my muscle biopsy site last week, Dr. Johnson made a new rule that patients participating in the study cannot fly immediately after the biopsy. He doesn't know if it bled so much because of all the walking or pressure changes or because I accidentally bumped it with my suitcase when I was unloading it from the overhead bins. The biopsy is a bit inconvenient because I'm not allowed to get it wet for 2 weeks. The incision is covered with steri-strips and a breathable plastic bandage. I decided that I was going to put big waterproof bandages over that area for showering. It worked fine, but the bandages are so strong they are stuck to the plastic, so I guess I will just keep them on until next week, when I can take off all the coverings.

Today, I came in to give samples and get another dose. I've got a new nurse today, who did a good job with the blood draw. She found a new vein because the draw yesterday was done on my bruised vein and one of my veins is still stressed from the IV.

I feel like my body is getting a little beaten up. I chose to do today's dose in my right quad because I'm still having pain in my left. So, I have the biopsy and pain in my left leg, new injection pain in my right leg, injection lumps and tenderness in my stomach, a bruised vein and 2 additional needle pokes in my left arm and another bruise on my right arm and one more needle poke.

The dose felt about the same as on Monday, the burning lasted the same amount of time - 7 minutes - but was less intense.

1st injection of the second dose

2nd injection


Symptoms Today:
as outlined above-
tenderness in abdomen
bruises in arms
pain in right leg from dosing today
muscle pain in left quad
calves, neck and back are good