I will be admitted to the GCH for treatment for (hopefully) two days on Tuesday the 2ND of December 08.
Apparently this is a very very very rare illness with most of the up to date study being done in Spain.
The good thing about this site is people can read and keep up to date the world over. My case has generated a lot of interest from people in the medical profession.
I am happy to create awareness of this little known illness. I hold eduction in high regard.
The treatment is simple, it can be done two ways, I.V.I.G. (expensive, synthetic blood) or a thing called fluid transfer which is when you get hooked up to a machine that filters your blood. It's similar to dialysis.
The Neurologist that found my diagnosis was not sure how I will recover from the treatment. It could be marginal or full.
Whatever the outcome, it sure beats being undiagnosed!
6 comments:
HI Phil. Jenny from Canberra here. Michael got this blog page from Base last weekend when he had a haircut. Wouldn't go anywhere else and hasn't had a cut since about March!!! i have had a few hacks at it and boy was it long. We haven't been up this year very much so we weren't aware you were still off work - to put it mildly !! i am sorry to hear you have been so ill and are still suffering the ill-effects. I am happy to read you had some diagnosis. Good place to start!!!! Having been through bad times over many years of glanj and chronic fatigue i can in a smaller way relate to your frustrations. Try everything. Be open to healing from even the strangest places that you would never have contemplated before. I would have drunk yak's urine if i thought it made a difference. Some of the weirdo things i tried have had a lasting good impact on my life. But enough of that for now. I will ask around here for ideas. I hope the treatment has only positive effects. Much love xxxxx
Hi Phil,
One improvement from last time I saw you: the skull on your eyepatch rock!!
I'm really happy to hear you finally got diagnosed.
I was good to see you on the GC but I reckon I won't be back until next year.
This is a great way to stay in touch and updated. I promise to write more often.
stay strong!
Cabin Boy / Pirate (never sure which to use now)
Got your text overnight. Fatnatsic news. So glad that they have been able to put a name to it. A good step forward that will hopefully ne followed by many more.
All good over here. Paris last weekend to watch the Wallabies which was good - we won - even though the game was a bit scratchy.
Keep up the good work
Hey Phil - so glad there is a treatment too!
Blogging is bringing you good luck, you're going to have to keep it up now.
Hi Tiger!,
I feel a sword needs to become a fashion item...I will have a look down here for an appropriate one otherwise ask for a prosthetic hook. Chicks dig them!
WE are both so happy to hear that you have some postive news, and and we look forward to hearing lots more great news!!
All I can say is AAAARRRRR!
Love Simo and Mel xxx
Fantasic news Phil!
Sounds like a small breakthrough. Just remember that baby-steps towards the right direction will one day become a giant step, so keep your head up!!!
Get well!!!
In my thoughts, Linn-Tanja
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