Re: Mito and. . . . ./Suhad

[Guest guest]

Suhad, Thanks so much for your response, my heart breaks for you every time I hear your story. I hope your new pool is bringing you and Leanna hours of joy! Chelsea also loves to swim, but our back yard isn't big enough for much more than a kiddie pool.

I fully understand your frustration over diagnosis. Her former neuro originally felt her condition to be benign and she should cacth up, even after her MRI showed gliosis (scarring of the glial cells), he said that was indication it was a fixed, nonprogressive insult to her CNS. It wasn't until after she passed 2 and had not met milestones he wanted to test for mito. I was told by just about every other medical proffesional the he was "the best" diagnostician in the area, and that he had really covered his bases sending us to U of M (where we heard the same thing he said). I actually asked him about Rett's before mito, and he said there was no way, because she did not wring her hands and was not autistic, as she made good eye contact. If it does turn out that she has either Rett's or Angleman's, I may storm his classroom at MSU (which is why he left his practice) and kick him in the teeth! Sorry for the rant, I just don't want to start all over again a 3rd time!

The neuro at Shriner's feels the gliosis could indicate white matter disease, which is why he has been looking into that. I believe I remeber he said at our 1st appt that Chelsea did not have the multiple system issues that he has typically seen in mito pts. He is in Chicago, and said he has treated and consulted on mito cases in the area. I will just have to wait and see, as usual.

e, Chelsea's mom (nonspecific mito)