Re: How severe is this??
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Re: How severe is this??

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Posted by Michael_needs_sleep on March 11, 2008 at 07:48:24:

In Reply to: How severe is this?? posted by Michael_needs_sleep on March 10, 2008 at 09:38:34:

First, RA -

Thank you for your reply. I've read and re-read your blog. And as I'm sure you *may* have heard, it rocks. VERY helpful and insightful. An invaluable resource to all of us.

Thank you as well Senn. Great insight there. I really appreciate hearing this kind of detail. It not only helps me absorb all of this in a way I can understand, it also shows me that I’m not alone. Which is how it’s been for me regaurding this for so many years.
I can feel almost daily how I'm starting to deteriorate. Brain functions are a big indication of that. As well as the fairly rapid deterioration of my physical abilities (energy, strength, speed, etc). Which is very hard for me to accept - I was a competitive Gymnast and athlete for many many years. So my physical condition and abilities was certainly one of my strong points. But now I feel dispondant and detatched. Mostly because it feels like my brain has slowed exponentially recently, and moving my body much is a chore somehow. I'm living in slow motion and honestly, I'm starting to get scared about that.
I'll get to the panic I have about all of this later. For now, panicing is a luxury I don't have. But I will absolutely need every ounce of help and support from you all!

Sounds like the concensus is to see an experienced speciallist first. One who's not biased when it comes to surgical options. Also sounds like if I can't get to Stanford, we all agree that it's imperitive that I find a surgeon who's experienced in this and hopefully trained by the Stanford bunch. Especially considering that it appears my condition is a bit worse than most and therefore perhaps more difficult/complex in terms of treatment.

Now, how might I go about finding these Dr's? Like I had mentioned in one of my other replies, I am coming up empty when it comes to finding someone who's very experienced.

Might you all have any suggestions? Again, I do understand forum rules and all. But website links are allowed I believe. I'm getting to the point of desparation. I truly believe I have one shot to get this right. And I also am starting to get the sinking feeling that I don't exactly have much time to get this train rolling.

Once again, a million thank yous for the replies so far. It means a lot to me.
Michael

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