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By Jenny on October 17, 2014 - 8:01pm
Jasmine, I don't know/remember the description or results specifically. You can call Dr. Geschwind's office and ask them to explain the results to you?? Good luck.
By jasmine on October 17, 2014 - 1:15pm
Jenny... i think dr. geschwind look at it.
what was the description you got for his mri by ucsf can u write it here?
By Jenny on October 17, 2014 - 9:37am
Jasmine~I can't say that UCSF can't be wrong; anybody can be wrong. But Dr. Geschwind and his team are considered the "experts" by many in identifying CJD by MRI. Did they ask for certain types/views of MRIs, and were they recent? Was it Dr. Geschwind that looked at your brother's MRI? He was the only doctor in my dad's case to correctly diagnose CJD by his MRI (tons and tons of doctors were involved in my dad's case, and CJD was confirmed by autopsy).
By jasmine on October 17, 2014 - 5:14am
the UCSF looked at one of my brothers mri and said they didnt see anything that is typical of cjd. could they be wrong?
By Jenny on October 16, 2014 - 5:59pm
Hi Jasmine. Sorry to hear of your brother's possible diagnosis. I'm certainly not a doctor, but when someone is given a diagnosis of something fatal, I would not hesitate to get a second opinion. I've heard of some of the symptoms you describe as coming with CJD, but not all of them. From what I've read, MRIs are usually the best way to determine if it is CJD. EEGs aren't always indicative, and even the 14-3-3 isn't always either. I would contact UCSF and have their memory department read your brother's MRIs (free of charge, if there's a diagnosis of CJD). Those guys are the experts, in my opinion. Best of luck,
By jasmine on October 16, 2014 - 5:12pm
thank u so much for your answer. can u find out what the MRI, EEG, lumbar puncture showed, like what the docs say in the reports?
i been told by many people that first eeg shows slowness of activity then it shows the periodic discharges or something like that. did they find any of that on your dads eegs?
what did the mri report say?
was the 14-3-3 test positive?
By Arturo on October 16, 2014 - 4:30pm
From what I remember they did numerous EEGs, MRIs, a lower lumbar puncture test for the 14-3-3 protein. Their was more testing done, but I don't remember what exactly I am going have to ask my mom, Feel free to email Lori, she will be more than willing to relinquish my contact information. If you'd like to stay in one-to-one contact. I'll post the test as soon as I get home. Take care, God bless...
By jasmine on October 16, 2014 - 4:05pm
which tests did they do on your dad? did they find out anything abnormal on his MRI and EEG??
By Arturo on October 16, 2014 - 12:29pm
I am sorry to read of your brother's diagnosis. Just hearing those three letters, CJD, sent chills down my spine. My dad passed 12 years ago (this Saturday). He battled Sporadic CJD courageously for 4.5 months,l passing one month after his 48th birthday. In the medical community CJD is regarded as, the "Great Mimicker" because it has so many similar symptoms of other neurodegenrative diseases. I hope and pray you do not receive a diagnosis of CJD, your brother is way to young. Take care, God bless...
By jasmine on October 16, 2014 - 6:02am
My brother who's only 28 years old has been given the diagnosis of "possibly' cjd. His symptoms started a year back with bad memory, depression and agitation. now he's demented and has really bad balance problems.
one thing i dont understand though is that he had (and still has) a lot of other symptoms that the docs can't explain. like he has severely dry mouth (so dry that his tongue is almost completely white), bleeding gums, TMJ, hair loss, complains of feeling cold all the time (like ice cold feet), nausea, frequent (but not daily) diarrhea, electric sensations on top of head and down the spine, bloated belly, tingle sensations in groin area and in feet... are these cjd symptoms? we want to get a second opinion on his diagnosis, as it seems there are too many symptoms he has that don't seem to be cjd related. would love to hear from other cjd families, if their loved one experienced these things.
oh and i shud mention that his mri and eeg are normal even though he has been really sick now for months.. is that normal in cjd?
By Arturo on October 15, 2014 - 12:14pm
I am sorry to read of your mom's passing. This monstrous disease shows no mercy in its rapidity of progression. You are now apart of a unfortunate but elite family. We've all walked down the road you and your family are walking on. My dad passed 12 years ago (this coming Saturday). He courageously battled Sporadic CJD for 4.5 months,l[ before passing one month after his 48th birthday. If you would like to stay in one-to-one contact, feel free to email Lori (at the address on top this page) Take care, God bless...
By Lesley Miller on October 15, 2014 - 11:08am
I am new to this site, but I have looked at it often since my mother was diagnosed with CJD on Septmeber 23rd. We lost her the following Saturday on September 27th.
She first started showing symptoms we think almost exactly a year before her death. It wasn't until August that the dementia started and we realized that she was probably not going to recover. My family and I had not heard of this disease until the doctors brought this up as a possibility. We are so very devastated still at her passing and for me personally so very lost without her.
By nora on October 10, 2014 - 4:19am
I am so sorry to read that your mother has been diagnosed with CJD, as tina carlisle has said there are other open and closed CJD groups where you can reach out on facebook,the more we reach out the more awareness we can raise about this disease.
I am sorry to read that your young sister died from CJD, the difference between Ebola and CJD is that CJD incubates in humans for many years, I have read that scientists beleive it is upto 40 maybe 50 years.
Hopefully with the advancement of CJD testing it will be possible to test for CJD from urine samples and nasal brushing, I believe this information is on this website but you can google it. How CJD is psread seems to remain a mystery though.
By tina carlisle on October 9, 2014 - 8:58pm
Aimee, I am so very sorry for the news your family was given today. I remember so clearly the day our family received that devastating diagnoses. My heart goes out to you and your family. If you would like to talk personally, please contact Lori for my phone number. I know that right now you are in shock, and do not which way to turn. All I can tell you is to take each day as it comes. Treasure each and every moment. As hard as it is journal this experience either by writing or video. Take lots of pictures, in time you will treasure them. Most of all let your mother tell you all she needs to say, (if she is still able) and you in turn tell her all that is in your heart. Don't be afraid to cuddle close to her, she will feel great comfort and security and most important she will feel your love. This journey is a painful one, filled with questions that cannot be answered, the unknown is what it hardest. Each person in unique thus their journey through this disease will be their very own. Care for her with all the love you have, treasure all that you will have to do for her, as hard as it was I took comfort in feeding my mother, reading to her, pushing her out into the sunshine. We found that music was very calming, my mother couldn't remember us, but sing all the words to "you are my sunshine". Your mother is my age, so I imagine you are a young lady, as a daughter I know the pain you are feeling, I know how scared you are, and I know how lost and alone you feel. I offer you a safe haven to vent your feelings, an ear to listen, and an open heart to welcome your pain. You and your family do not have to be alone in this journey. Our family did not have the benefit of knowing about this wonderful site. There is also a face book site for families like us. It is called CJD Family and is a closed group. All you have to do is make a friend request. That site will allow you to ask questions, vent your anger and frustrations, but most of all give you the strength and courage to get through this hell you are living. My offer is extended to your whole family. It truly helps to talk personally with someone that has experienced the heartbreak of this disease. My mother passed 3 years ago, I miss her more with each passing day, it is for her that offer myself to others. One in a million is a very lonely place to be, that's how our family felt, so if I can share with others and make this journey less lonely, I honor my mother's life and she did not die needlessly. For all others that read this, the offer is open to each of suffering in pain. May strength and courage reach across the miles and ease this path .
By Linda on October 9, 2014 - 8:05pm
I lost my sister seven years ago to this horrendous disease. She was only 49. And people are worried about EBOLA? I just don't get it.
By Aimee Bone on October 9, 2014 - 6:02pm
Today my mom was diagnosed with CJD. I am stunned, and feel so lost and overwhelmed. She is 59 years old and was mostly healthy until early August. It took about a month of endless tests, observations by her doctors, and ruling out all other possible diseases to come to this conclusion, and her doctors shared with my dad, sister, and me today that they are 95% certain in their diagnosis. It is so rare, and seems so unlikely, and I can't begin to wrap my mind around this. I am hoping that becoming familiar with this site will lend us some support and educate us as we come to grips with this devastating diagnosis.
By tina carlisle on October 9, 2014 - 5:18pm
I posted a message earlier to Meriella, please know that the offer of friendship, an ear to listen and heart filled with pain, extends to anyone who needs someone to talk to. I have shared my experience with others going through this monster, and those that have lost someone form it. Please contact Lori for my personal information. My heart goes out to all of you.
By tina carlisle on October 9, 2014 - 4:58pm
Mariella, if you would like to talk personally you have my permission to contact Lori for my personal information. It is best to reach me by phone. My heart aches for your pain and sorrow. I lost my mother 3 years ago to this monster. The emotions your are feeling are all normal. Your life has been turned inside out and upside down, and I am certain you do not know which way is up. Grief has no rules, no right or wrongs. There are also no time restrictions, so don't allow anyone to tell you it's time to move on. Take each day as it comes, embrace this time with selfishness, for this pain is yours and yours alone. We cannot explain this disease to anyone that hasn't been through it themselves. So many don't understand our frustrations and despair. As you know CJD is an automatic death sentence with no ray of hope offered. The speed from beginning to end, doesn't even give enough time to digest what is happening. It's like being sucked up into a tornado spinning out of control destroying everything in it's path. When it finally sets you down, you don't know what hit you. You are not alone in this journey. The path you are on now will one day lead you to a "new normal". I miss my mother more with each passing, that said, I am now able to smile when I think of her and am able to see the joy she brought to my life, and most of all the joy that surrounds my life now. My deepest sympathy for your loss. Words are not enough, so I offer my friendship, an ear to listen, and a heart filled with the pain of CJD Hell.
By Arturo on October 9, 2014 - 12:15pm
I forgot to add, feel free to email Lori (at the address of this page). She will be willing to relinquish my contact information.
By Arturo de la Cerda on October 9, 2014 - 12:08pm
Sorry to read of dad's diagnosis. The rapid progression of this monster is just unfathomable. My dad passed 12 years ago. He courageously battled this monster inside of him for 4.5 months. Passing one month after his 48th birthday. If you would like to stay in contact on a one-to-one basis. feel free to email Lori (address of this page. Take care, God bless..
By Mariella on October 9, 2014 - 11:27am
My mother has passed away on May 16th. I am still sad and angry. How can a strong healthy woman suffer from this horrible disease. My mom was diagnosed on April 14th, 2014 and was taken away from us on May 16th. It was horrible to see her decline so fast. I miss her so much. I am willing o share my story with anyone. I woould also like to hold a walk for for CJD, in NYC. I have no clue how. Any help is greatly appreciated.
My heart is heavy and forever broken. My mom was too young :(
By Stephanie on October 8, 2014 - 6:31pm
My father was diagnosed with CJD about on month ago...I guess you don't get a final diagnosis until an autopsy has been performed but he has all the classic signs. I care for him every evening and then go home and cry for my mother and how my father has ended up. I almost think it would be better for him to go...he doesn't talk anymore and we do everything for him. How can something be so fast to take him away within weeks. Just 6 weeks ago we would have great conversation and now he is a blank stare. I'm sure the next few weeks will only get more difficult...so any advice on how to get through it. I will continue to help care for my father but its breaking my heart.
By Arturo on October 7, 2014 - 12:02pm
I'm sorry to read of your mother's diagnosis. My dad battled Sporadic CJD 12 years. The duration lasted 4.5 months, passing one month after his 48th birthday. Here on the guestbook, we are all to familiar the road you and your family are walking down. Please feel free to repost back here with questions or just to vent. If you would like to stay in contact on a one-to-one basis, please feel free to email Lori (at the address above this page). Lori will be more than willing to relinquish my contact info. Take care, God bless...
By Lisa Bryant on October 7, 2014 - 12:10am
My Mom was diagnosed with CJD a little over a month ago.
By tina carlisle on October 6, 2014 - 1:06pm
Allison, I am very interested in sharing our family's story with you. My mother was clinically diagnosed in June of 2011 and passed August 2011. Please feel free to contact Lori for my information. I have consider writing a book, but have no clue as where or how to begin. Our stories need to be told, no doubt about it! This disease is not one in a million. People are dying daily and no one wants this monster to go public. The powers that be want to keep this buried and keep their heads buried in the sand. It is all so frustrating for all that have been devastated by CJD Hell. With this monster it does not end with the death of a loved one, it affects all of us left behind. We are no longer able to give blood, donate organs or tissue and we live in constant fear it could strike again. Please give me a call. I have talked to other family going through this nightmare, it is a great healing experience to share the pain with others. I look forward to hearing from you. Tina
By Joan on October 6, 2014 - 8:36am
So sorry for your loss. Seventy nine days is a long time to wait. It must be extremely difficult for you.
I have so many concerns. The cat still sleeps with my brother. I have suggested that there be an autopsy on the cat when it passes but obviously that is not something they are thinking about right now.
This illness is consuming me right now. I just hope they will follow through with the Prion Research Surveillance Center with an autopsy with my sister in law. Also, has anyone witnessed a CJD patient constantly moving their hands like a musical conductor. She had Huntington Corea as a child about 50 years ago and unusual movements were part of that illness.
By Chris on October 5, 2014 - 3:36pm
Hi Arturo and Joan,
I too have some concerns about feline CJD. I read those articles about cat transmission in the UK, and then remembered that about 3 years ago, we had a cat named Juan that developed tremors which appeared to be neurological. Shortly thereafter, the cat began behaving strangely in many ways, and then had kidney failure. Because Laura had once kept a petite cat named Punky hydrated for 2 years with subcutaneous hydration, she felt she could do the same with Juan. But Juan, being a very large Maine Coon cat, resisted very energetically. It is quite possible that Laura inadvertently stuck herself with the needle, and that the needle, itself, might have come in contact with Juan's spine or spinal fluid, as the hydration was along that area.
Still waiting for the brain autopsy results (this is day 79)...
By Arturo on October 4, 2014 - 5:54pm
Cat's do in fact have Prions. Back when Europe had their BSE or "mad cow" epidemic a cat was fed feed that had grown up bone mill from infected cattle in it. As a result the disease crossed the species barrier and caused FSE or Feline Spongiform Encephalopathy. I highly doubt that this is an environmental factor in contracting CJD. Hope this helps. Take care, God bless...
By Joan on October 4, 2014 - 4:53pm
I know this probably seems wildly absurd but has there ever been a study done to see if cats have prions. My sister in law took in a cat years ago that she found and for years it slept in her bed. It is sick and only weighs about 4 pounds. Has a survey ever been done of CJD patients to see if there are any environmental similarities that these patients have in common. I have seen a few posts in this guestbook where people casually mentioned cats. Just searching for answers like everyone else, I guess.
By Arturo on October 1, 2014 - 12:28pm
I'm sorry to hear of your mom's passing You are right, this disease is a disease is the devil. No one should watch their loved one go through such a monstrous nightmare we call CJD. Having been affected by this disease, you are part of a family that extends the word over. My dad passed from Sporadic CJD 12 years ago. He courageously fought this disease for 4.5 months, passing one month after 48th birthday. Since his passing, at 12, I have been raising advocacy awareness of CJD and other Prion disease. If you would like to keep in touch with a family on a one to one basis, feel free to email Lori (at the address above this page). Take care, God bless...