Not whacked or kooky at all Lil!

I wanna mention all possibilities!

LOL@scotz!

Awwwww dm...I believe!

*bump*


Lixy...how is she?

good bump!

It was a good bump. Lixy, we love you to pieces.

Hi guys...sorry I haven't been around!

Not much time today and sorry to say...not good news either.

Sis was transferred to Christiana Hosp. and now is being transferred to John's Hopkins in Maryland. They have narrowed her dementia down to one of two. Both are extremely rare.

Cruetzfeldt-Jakob disease is one they are looking at. They call it CJD for short.

Pick's disease is the other.

Both are fatal. CJD is the worst of the two.

I'm sorry for the lack of time today. I'll BBL to explain more. TY for caring!

(((((EVERYONE)))))

((((((((((lixy))))))))))))))

I'm sending you strength and hopes that John's Hopkins has a "better" diagnosis.

(((((((((((Lixy))))))))))))

SHIT! :banghead:




not what I was hoping to hear :(

((((((((((((((( Lixy )))))))))))))))

Wish we were close enough to be at your side. For sure our thoughts are with you!

DB & Mrs. DB

(((lixy)))

Lixy I'm so sorry.((hugs))

What they ^ all said...


Times infinity...

Creutzfeldt-Jakob?!?! Crappety crap crap! Did she have a corneal transplant ever? Oh Gawd, I hope that it is NOT that. I hope that Lil's hunch is right and it is hormonal and it can be treated by medication.

Much love and prayers to you and your family

Damn...................... (((((((((((((((((((((Lixy)))))))))))))))))))

Luv you girl... be strong!

((((((Lixy)))))))

I'm sorry to hear this news and I pray that you get a different, and treatable, diagnosis from Johns Hopkins.

Lixy.. ((Hugs)) prayers... and my shoulder and ears if you need them... I will keep you all in my thoughts...

Lixy, if you are planning a trip to Johns Hopkins(or you're already here) I will gladly keep you company,hold your hand,talk.........whatever you need....I am 10 minutes away.

((((Lixy))))

I feel for you hon. Give your sis BIG hugs from me, and all of us. And give a load to yourself, too.

We love you girl.

DM

(((((Everybody)))))

Sis never made it to Johns Hopkins. Damn insurance company would only pay for one day and they'd have needed her to stay longer for tests. I don't see how these insurance companies can continually get away with this kind of shit...but that's another story.

BIL is going to seek local groups that are doing studies on CJD and go from there. In the meantime sis is still at Christiana.

TY for your support everyone. It helps to spill my guts sometime!

You feel free to share with us anytime, and if you ever need to call, you know we're here. God love you, Lixy. Take a big hug from the two of us.

UPDATE...

Sis has been tested and tested and they know what it's not. It's not CJD or Pick's (the worst of the worst). Trouble is they still aren't sure what it is. BIL recently changed sis to another neurologist and he suggested testing for encephalitis. I'm not sure why the two spinal taps didn't show this if it is the case...but then I'm not a doc and so I'll leave it to them.

Sis has been a bit better since she came home. BIL took her to their doc and he took her off some of the heavier meds that they had her on in the hospital...to control her, I guess. She needs constant attention and so BIL has her in an adult day care. Sis thinks she is working there and she "helps" care for the other clients who have different stages of dimentia due to aging and/or disease.

At one point she thought she was pregnant and talked of having her baby girl soon. I guess she'd forgotten she had a hysterectomy over a year ago and can no longer have a baby. She's mentioning the baby less and less lately. We didn't stop her from talking about her pregnancy because we didn't see that it was harming her in any way to believe it. It actually seemed to soothe her.

Well anyway...we aren't sure of the cause of her dimentia and we don't know her prognosis but we have hope that she may recover fully or at least to a functional level. It doesn't seem to be fatal like we intially thought, but we still can't be sure. She seems more focused now and BIL says she seems to get better every day. There are some days that are worse than others but BIL is such a rock and he is dealing with her in the most loving way anyone can.

What the future holds is a mystery for sis for now. But then...isn't life a mystery anyway?

Thank you all for your thoughts and prayers!

Thanks for the update, Lixy. It doesn't sound like she's out of the woods but that is the best news since this thread was started. :console:

As long as they keep on eliminating what it isn't, I suppose that's making progress...eventually they'll narrow it down to something...have a big hug out of petty cash in the meantime, (((Lixy)))

(((((Lixy)))))