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Hi ,

The doctors are working together for me but of course, this is not an easy thing

to determine as even Dr Cohen can't figure out what is going on but he is

involved. My PCP is in touch with him and he has also written to me and called

. I do think I will need the IV Carnitor which I probably should have had

already, but it's not something that is done commonly - at least not here.

I have not really been without sleep but I did put a lot of pressure on my

already struggling system when I went to Cleveland and then Ann Arbor. Two

weeks later, I had surgery and then two weeks later, attempted an activation. I

believe all of this has taken it's toll on me as I really started this " crash "

in November. I should have held off with the surgery for at least a month. As

they say - hindsight is 20/20.

and Cindy are wonderful and they both live close to me. As a Mom, I am

concerned for them and their lives which are very busy dealing with active

families and children who have Mito as well as dealing with the disease

themselves. I try hard not to ask much of them but I know I am not winning.

The last thing I want to do is to put heavier loads on their already slumping

shoulders.

I'll work this out somehow, but I really strongly believe that it's no longer a

good thing for me to be living alone. Perhaps, I could offer room and board for

someone to move in with me but that's a scary thing to do right now. I guess

only time will tell.

Alice

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