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January 20, 2009


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This is so huge, OSM. I hope the florinef continues to bring you relief, and maybe even some healing if your body gets a bit of rest from what it's been through. Such serendipidity that Tara's post rescued you from the self-doubt we tend to develop after years of being told we can't feel what we feel.


I am always pleasantly surprised when the very information we need arrives in the most unusual ways, just when we need it the most.It makes you wonder how often that you might have been used as that sort of vehicle in your life, for someone else, without even knowing it! I will make a point of popping into visit Tara's blog. In the meantime, I hope today is a better one.


How exciting, OSM and how happy I am to hear of this! Now, I know both you and I are big House fans, and today, I watched an old rerun where ACTH was mentioned over and was the one with the woman at the "off track betting" parlor had a seizure...and all the others thought she had Meunchhausens (sp?), but House felt she also had something real going on. It had to do with Cushings Disease...maybe you can find that episode online and watch it? (it didn't have a happy ending tho, but it's not the same thing you are dealing with).

AND, I must say I've seen you face to face on a few occasions and you are definitely not a madwoman. Particularly clever? yes! But not mad. No more than all brilliant people are mad, tee hee.

I know this feeling when you read something or find something and it's Eureka! I had that with Autonomic Dysreflexia, when I found that, and it is the thing I deal with several times a day for almost five years now, and all docs have looked at me like I'm speaking Martian (but of course, not letting it show that they don't know what I'm talking know how that is!)...and then to find it while I was researching something for someone else, it still is a feeling I can relate to.

Best of all, your seizures are reacting in a positive way, and as "vanub" says, your body needs a bit of rest from what it's been through. All this Florinef regimen might become even more effective once your brain gets a chance to stop shorting out!

I'm going to bed with good thoughts, knowing you have re-found your hope. It's easy, with a chronic condition to lose hope...I'm thankful to God that you were led to information that "clicks"!

love you, galfriend

Lisa Moon

OMG, that's wonderful news! I've actually stumbled across West Syndrome in my readings lately, but can't recall how I arrived there... ahh, surfing the 'Net!

I have some sketchy sounding withdrawal sort of reactions when I have run out of Lyrica (yes, I do know it was horrible for you) but it has provided much relief and so I continue on with it... it has only been when I couldn't afford the bloody refill that I ran into problems!

And I certainly don't condone random meds fiddling-with, but my own doctors seem to know me well enough to trust that some minor dosage adjustments are things I have successfully handled (um, did I need to go back and say "Well, the 0.25 mg helped a little, but I think your suggestion of trying 2 of them at a time would work better. Can I do that now?" I think that's unnecessary.)

I'm glad you're very informed and very aware, of both the situation and your body. Keep listening to it!

SUPER glad this has given you a hope-boost just when you needed it.

Big hugs filled with love and hope to you.


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