Help...could it be CJD ??

[cigi922]

Hi
I really don't know where to start here. My name is Carmen, I live in Texas. My husband has been in a nursing home since Aug. 2005. There has been no specific, concrete DX made as to what is wrong with him, just "well, it's not this, but this fits best".
My husband was DX w/ relapsing polychondritis in July 2003.....just affected his ears, no mental decline. In Sept. 2004 his personality changed, was very confused, blood red eyes, severe headache, loss of balance. At the time he was working in the soiled linen department of the hospital. He was DX w/ menengitis, (viral), and from that moment on......it was like night and day as far as his mental state. He hallucinated, had mania, personality changes bigtime, gait/balance problems, extreme dementia. We did every test known, went to every specialist. He declined so rapidly. I took care of him at home until Aug.2005, and could no longer do it alone. They put him in a nursing home, under hospice care and "gave" him 2 months to live.
Well...he's still "here", but can't talk, walk, feed himself, does not know me....basically in his own world.
The Dr's have called it dementia with lewy bodies, MS, chronic menegitis, encephalopathy.....one Dr suggested CJD. Still, they say......"we just really don't know". He is still under hospice care as this is expected to be terminal.
Any thoughts out there?? Ideas?? Suggestions???
Please....anything at this point would help. The Dr is not trying to DX him know......just keep him comfortable. There's no ongoing treatment except some prednisone for the relapsing polychondritis and seraquel for the...well, psychosis....(I guess)
Anything info or thoughts would be greatly appreciated.
Thanks
Carmen

[flatfish]

hi carmen,

so sorry to hear about your husband. here is some information that may be helpful ;



CJD Foundation National

Toll Free HelpLine

1-800-659-1991

The Creutzfeldt-Jakob Disease (CJD) Foundation, a nonprofit

501(c)(3) has established a NATIONAL TOLL FREE HelpLine.

The number is 1-800-659-1991.The HelpLine is answered

9-5 Monday thru Friday. At all other times messages can be left

and they will be returned promptly.

PATIENTS, FAMILY MEMBERS, MEDICAL PROFESSIONALS,

HEALTHCAREWORKERS, FUNERAL DIRECTORS, EMBALMERS

AND OTHERS ARE ENCOURAGEDTO PHONEWITH:

• Questions about a suspected or confirmed

CJD diagnosis

• General questions concerning CJD

• Concerns about hospice care

• Questions concerning patient care

• Questions concerning family support

• Specific questions about physicians or researchers

• Questions about surveillance

• Concerns about funeral arrangements and/or

autopsy

• Information to share

• Donations to The CJD Foundation to support the

HelpLine and the work of the Foundation.

The Foundation can also be contacted through our web site,

www.cjdfoundation.org.



snip.............



http://www.cjdfoundation.org/pdfs/CJDBrochureFN.pdf



Pierluigi Gambetti <pxg13@case.edu >



TSS

[cigi922]

Thanks so very much, I will contact them and appreciate your response.
Carmen

[Beth]

Hi Carmen,

I'm so sorry to hear about your husband's condition. It sounds like a devastating situation. It also sounds very much like my Dad's case of CJD, except that his went much faster - inititial symptoms in May, vegetative six weeks later, died in November. I know other cases vary in their length, but its been a long time since I've done much reading on the subject (my Dad died ten years ago).

You'll be in my thoughts. Please let us know what happens.

[cigi922]

Thank-you Beth ~
It seems like everything "fits" with a DX being CJD except for how long this has been going on.