Re: Is there a dr. in Ohio who does biopsy? Myst

[Guest guest]

Best wishes that all goes well. Why are they fighting the skin biopsy, those are pretty routine? You would think they would rather pay for that then the 20,000 dollar muscle biopsy. Sometimes people amaze me. Grace never had the skin. It was scheduled, but she ended up with an emergency colonoscopy that day. Dr. Cohen decided to forget the skin and go straight for a muscle and liver wedge biopsy. He told me it was the only thing left that would give us an answer.

Do not be afraid of getting a nonspecific diagnosis. Grace is nonspecific, and she is doing well. It is frustrating because you cannot compare them to someone who has delt with it, and it is all guessing towards an outcome. But, at least you know more than you did before. Before the biopsy we knew nothing, and all we saw was our little girl dying. Now we know what it is, somewhat, and can treat it the best we can. We take one day at a time, and work with what is on our plates today. I feel relieved because now we deal with things like migraines and speech delay. One year ago we were dealing with fast progressing liver disease. She was very close to liver failure, and needing a transplant.

Best of luck and be strong.