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CLS history for one

clswalt Message
6 Mar 2009, 12:55 AM

To Alan I was worried that something happened to you. I am so glad Dr. Greipp gave me this link. Dr. Greipp The Doctor who contacted you for me Jan 2008 was Dr. Greg Fino. He is the reason that I am still around. Please contact him about the Albumin. You can find him at the intensive care@ St. Clair Hospital · 1000 Bower Hill Road Pittsburgh, PA 15243 I am speechless at what I have learned about the effects of CLS that others have endured. I feel very lucky to be in my present condition. I was also in dire straights my first time, in fact, the hospital called my family members in for the last visits. Fluid in the lungs, failed body functions and not much chance of survival. But the St Clair Hospital staff did a great job. The lucky thing for me was that I was not cut in the arms or legs (very close though) and a really mean physical therapist, who I now respect more than anyone, who just would not quit for me. I now have two drop feet since 2005. I can run somewhat, bicycle, dance and still coach baseball. Walking slow is a problem due to not being able to cast the feet easily as I walk. Muscle/nerve damage will do that. I have not encountered infections, although I am quite worried about what the muscles look like after 4 years. No one has explained medically why I am brace free. I think it is just being stubborn and making other small muscles compensate. I do many exercises to ensure that the achilles stays intact. I am an engineer, not a doctor, so I leave this one to Dr.'s. The nerve induction tests confirm the nerves are dead. There is no gate firing in these legs. I know when to go in before I pass out. I am not sure how, but I know. This has kept the CLS incidents mild. 2 hours in the ER on Albumin makes me absolutely feeling 100%. The blood pressure returns to 120/80 and I return to work the next day. I hope to never see another intensive care bed. I seem to be having incidents every two months now. I agree that there is no common cause. I keep notes everyday and try to solve this with engineering skills of troubleshooting. Nothing seems to be common.
allenoverland Message
6 Mar 2009, 03:23 PM

Hi Walt. It's good to see you on Rareshare and to know that you're doing OK. And I think its amazing that you're able to get around without braces...I think persistence is key to rehabilitation. I work at improving my gait every day and though I have braces I can move my left foot up a little and even jog though not more than 100 ft. I am participating in a study of CLS at NIH and have been lucky to be relatively symptom free since Nov. 03. I did have a minor episode one year ago with some swelling in my legs but after getting fluid at the emergency room it went away in a few days and my blood work checked out OK. I hope that this Forum will allow us to communicate and that eventually we'll find a way to control CLS. Take care. Allen