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By Daisy on June 15, 2014 - 10:00am
THankyou. Nora...I will ask my kids to set it up.I am sure you too are aware of the stigma attached to the disease...we are not embarrassed...I personally am with some of the medical fraternity and have read some hideous accounts of how people suffered in either hospitals or nursing homes as everybody thinks it is all mad cow disease.....even for the Variant CJD the ignorance of transmission is almost inconceivable.I know it is a rare disease but I wish people would take the time as with any disease we encounter to find out the facts.Ss if this suffering is not enough.I wish I could fund a hospice in every country,and educate people ...and palliate those people who,at this time sadly have no cure.I was very fortunate as I have mentioned before to have the experience and to be a nurse...my sister died with dignity,and with comfort....and it was still like a horror movie.....my heart goes out to all those affected.
By Daisy on June 14, 2014 - 8:42pm
You sound so scared.....please contact the CJD Support group and ask them to put you on to someone who can help you...they are fantastic people.Good luck x
By Daisy on June 14, 2014 - 8:38pm
dear Nora,Thankyou for your information....I am not a face book user....my kids say I'm lagging as I am only 55 but I find it too exposing...do I need to join facebook to attain the information? And yes I will definitely be bring back and sharing any new information I gain from the conference
By Daisy on June 14, 2014 - 8:35pm
I have not heard of anybody with a condition which produced CJD Like symptoms. Neurological diseases initially tend to mimic others...Dementai alone has over 100 different types,and sadly people are presenting earlier than ever before....this would be partially due to increased medical knowledge and awareness. I think ,and I am no expert that the definitive EEG And lumbar puncture results are the most reliable tools medicine has to date..unfortunately you can get inconclusive results,and also these results vary in the individual and do not present till late stages. I know with my sister ,maybe due to her age,the DRS We initially dealt with stated later that they never suspected the disease till midway through her symptoms,and again the rapidity is what ,after trying to exclude all others, led them to send her for the two mentioned tests. I hope the neurologist you are dealing with knows that you are concerned and that you have identified someCJD Like symptoms.Lymes disease is one that I have read a lot about...this tends to mimic some of the symptoms.I will try and find what I can for you.
By Danno on June 14, 2014 - 1:56pm
Still.... Nobody has answered my question: "Wondering if anyone knows of anybody who had a condition which produced "CJD"-like symptoms, but actually was found out to have a treatable condition?".
I'm looking for cases where people had CJD-like symptoms, or were misdiagnosed with CJD, and actually had a treatable condition. Please, if you know of someone like this, can you inform me what their actual diseases was, and if they managed to get diagnosed correctly (in time), so they could be cured?
By Daisy on June 14, 2014 - 10:29am
hi again.....it's Daisy.Iam booked to attend the 2014 CJD Conference at the Melbourne university in October of this year.I like everybody am hoping for any progress in diagnosis and of course treatment. I will bring as much information back as I can.Prayers to all of you
By Daisy on June 14, 2014 - 10:17am
hi Danno,Todd and anyone else who is reading.Since my sister died,I have spent many hours scouring through any literature about prion diseases in general. For a long time,and even now sometimes...I continue to look back at her life...of course I knew her very well.I remember childhood illness's and general health concerns she had.IT always ends up with the same outcome.Sissy was ,like the other "one in a millions" predisposed to CJD...at this stage,no one knows what makes the individual predisposed....of course for those with genetic,it has been identified...none the less still as sad....variant CJD has a baseline....very very sad....I hope the world never sees what the UK Lived through,and continues to be vigilant about in the nineties.Being a registered nurse,helped me enormpously...not at the time of course,but I still work full time....with the elderly...so I live and breathe cognitive deficits and end stage neurological disease every day.The time I spent with my sister in her final three months was priceless....I knew what was coming,but somehow time stood still.....the rapid decline was what was so alarming.The CJD support group linked me with a nurse who,made herself available to speak to literally 24/7.....this disease runs a very rigid path...of course individuals vary,but that nurse told me daily what to expect.....so I was ready.I hope all of you who are watching loved ones decline can access support....Since finding this site... I think of you all every day and hope the people you love will be made as comfortable as possible.Please ask for help.DaisyL
By nora on June 14, 2014 - 6:18am
There are two vCJD blood tests developed that could potentially eliminate the problems you are talking about, it's a case of doing some research about this disease as I understand that one of the tests may be able to identify sCJD. I would put links up but they may get withdrawn as previously has been the case.
By Danno on June 14, 2014 - 4:25am
Hi....... Wondering if anyone knows of anybody who had a condition which produced "CJD"-like symptoms, but actually was found out to have a treatable condition?
There are cases out there in the literature, take a look: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3170496/ ("Treatable Neurological Disorders Misdiagnosed as Creutzfeldt - Jakob disease").
It seems like infections (fungal, viral, bacterial), autoimmune conditions, Vitamin B1/12 deficiencies, and a ray of other things can produce similar symptoms (to CJD).
It's important to get second and third opinions if your loved one is diagnosed with this disease, since there are people out there who were misdiagnosed with CJD, died, and after their death, biopsy found out it was actually something treatable!!
By Jenny on June 14, 2014 - 1:01am
Hi Todd~ So sorry to hear of your mom's illness and likely diagnosis. There is nothing I, or anybody, can do or say to comfort you, but those of us on this board are here for a reason, and we can at least relate in some way to what you're going through. It's terrible. Truly awful.
My dad passed away from sCJD a little over 2 years ago. Fortunately, or unfortunately, he had a longer duration of illness than most (about 18 months). My only advice (like Daisy said) is to spend as much time with your mom as you can. Don't let anything go unsaid. Don't wait another day. You may think you'll tell her tomorrow, but tomorrow may be the day she loses the ability to respond, or comprehend, or recognize you.
Have you gotten her spinal tap results? Have you sent her MRIs to Dr. Geschwind at UCSF? They will read them for free. Out of all the many doctors my dad saw, he was the one (the only one) to definitively diagnose his CJD before death (we did the autopsy, which confirmed it).
My thoughts are with you, and the others facing this horrible disease.
By Todd on June 13, 2014 - 1:34pm
Thank you Daisy. I'm sorry to hear about your sister. This is a horrific disease. We believe my mother has the Sporadic CJD. It is rapid. I spend as much time as I can with her. I think the hardest thing is watching her go through this and knowing that she won't be with us. I know I'm experiencing the same feelings you must have had with your sister. I keep telling myself that we will all see one another again someday.
By Daisy on June 13, 2014 - 10:54am
hi Todd.my name is Daisy.im so sorry to hear about your mum.This disease is so rapid...every day there will be a new decline. My advice is to stay close to her and tell her you are there beside her.I lost my young sister in2012...she was 49 ....she passed away 7 weeks and I day after diagnosis.This is such a sad disease ...and the fact that t is so rare is why,I'm sure there is little progress.My thoughts are with you
By Todd on June 12, 2014 - 12:32pm
My Mom started having problems last summer (around July 2013), after my grandmother’s passing (June 5th, 2013), and it got worse in the fall, especially after my stepdad’s cancer surgery. My mother took care of my grandmother for 22 months, and for the last 6 months of my grandmother’s life, she stayed with her 24/7 caring for her. My mother’s nerves were shot after this. In September of 2013, my mother and stepfather sold their home and moved to my grandmother’s house which was a very stressful time, giving away furniture, painting rooms, the moving and coordinating it, etc. In November and December of 2013, she cared for my stepfather, waiting on him as he recovered from surgery.
Between December 2013 and January 2014, I had taken my mother to the emergency room several times (about 6-7) because she had an uncomfortable tingling sensation throughout her body (mostly in her arms, chest and face) and complained of a choking feeling. When she’d lay down to sleep, she said she felt like she was choking. She had been to several Doctors with no help whatsoever and on April 7th, 2013, we had convinced her to see her doctor and have a brain scan. At that time, I thought maybe she had a tumor in the brain because in February 2014 she started having short term memory loss. In March 2014 she started having trouble writing, using the computer, remembering how to use the phone or add or subtract.
On Wednesday night, 4/9/2014, I was visiting her all evening and she was not herself. For a couple days, she was lethargic, on and off, but that night, it was bad. Bob, my step-dad, helped her in the bathroom and she could hardly walk or stand. After 45 minutes in the bathroom, she was so weak and distressed I thought she was having a stroke so I called 911. She was taken to the hospital and they did another head x-ray, a brain scan, an MRI and a spinal tap. By the second day in the hospital, they told us they were 90% sure she had CJD. Something happened that night, her face grimaced and it was very scary and she has not been the same since that night of April 9th, 2014.
Currently, she is having a hard time saying what she needs to say to communicate, progressively getting worse. Her ability to hold a spoon, stand, etc. is getting worse. She has good days and bad and can still walk when she is not overly tired. She sometimes suffers with insomnia and she gets paranoid thinking people are trying to take things from her, her house, her cats, etc. We have contacted Hospice and are now starting that process. I still wake up at night, can't sleep and questioning if this is really happening to my mom. It's been very difficult.
Todd, Corning, New York
By Arturo on June 11, 2014 - 12:53pm
CJD is known as the great mimicker. We all hope and pray you don't have CJD. Take care, God bless...
By joey on June 10, 2014 - 3:56pm
I think I may have vCJD... So scared... it started off many months ago with extreme restlessness, agitation... then recently I have become confused, with memory loss... even what happened just 1 hour ago seems like it happened years ago... I'm only 23 years old. I forget how to spell words I usually had no trouble spelling, and I have deep depression and anxiety and insomnia... I'm wondering: is this necessarily vCJD or what ELSE could it be? My MRI is being evaluated by one of the top neurologists ,but I'm just wondering, has anyone had a REVERSIBLE cause of their memory and confusion symptoms?
All people posting on this forum are probably here because they know someone who had CJD... But I've read cases in the literature that suggests that there are things that seem like CJD (with same symptoms), but they are reversible.
can anyone offer some encouraging words, like if you knew someone who had memory loss and confusion, but it reversed itself, or it was a treatable condition?
really scared while waiting for mri results!
By Tom on June 7, 2014 - 8:29pm
Hi Daisy, my name is Tom Curley I lost my wife Dolly to CJD on April 14 2014. I'm sorry for your loss of your sister. What was her name ? I've never heard of this disease and my wife of 45 years was a RN and a legal nurse. This Disease took my Dol in 2 months . Did anyone from CDC contact you about the disease. What was on her death certificate reason for death? and what state was she from when she died. The only people who were out their for me was the CJD Foundation and the CJD awareness group. NOT the medical profession at all.
By Daisy on June 7, 2014 - 10:28am
my name is Daisy...I lost my dear sister to sporadic CJD In jan 2012 would love to talk to anyone who wants to hear or talk
By Arturo de ls Cerda on June 6, 2014 - 12:25pm
Sorry to read of your dad's passing. My dad passed from CJD 12 years ago. He battled this monstrous disease for 4.5 months, before passing one month his 48th birthday. Please do not hesitate to post back here. If you would prefer to talk to a family on a one to one basis, please feel free to email Lori (at the address of this page), she will be more than relinquish my contact information. Take care, God bless...
By Michael on June 5, 2014 - 12:09pm
I was tested at UCSF. I was poked and prodded (just kidding) for 2 days during testing. The researchers know the results of my testing. I opted for them to not tell me. When and if I change my mind, I can contact them for the results.
St. Louis, MO
By nicole yawn on June 4, 2014 - 3:58pm
Michael, thank you for sharing so much. And I am sending hopes of "all clear" for you and your daughters. This truly is a horrible illness. And then to wait around for bombs to go off over lifetimes is near torture. I also have family members who have opted not to test. I must say it frustrates me because I believe the cure/treatment will only come from intense research on our families who carry the genetic mutation. But just my view. Wishing you and yours the best.
By Sandy on June 1, 2014 - 2:14am
Hi everyone. I am so sorry to hear about so many of you who have suffered through this monster of a disease. My mom was perfectly normal when she suddenly started having trouble remembering things like doing her checkbook. Three weeks later her left side was numb and she was acting really confused and talking in circles. My brother and I thought maybe she had a stroke. We took her to the ER the day before Easter and they couldn't find anything, so they sent her home and she saw a neurologist 2 days later and had an MRI the next morning. She was admitted to the hospital that day. She had every test known to man all the while she was quickly declining. One neurologist from Mayo Clinic thought it was CJD from the beginning just by her MRI but all the local drs disagreed until all the test were coming back negative. She started to forget who we were. It broke my heart when she looked at my 13 yr old daughter and couldn't remember her name. She started to get combative with the nurses and have hallucinations and now she is in a coma like state and doesn't speak and rarely opens her eyes. I don't think she sees us anymore. My heart is breaking. I went today to see her and she is having trouble breathing. I think she is getting pneumonia because she has an NG tube because she cannot swallow anymore. I am trying to be strong for my 3 kids but it is really hard to see her go through this. She is a wonderful Christian wife and mother of 2 and grandmother of 6. Her husband, my step dad is having trouble coping because he has Alzheimers really bad and forgets what we tell him so we have to remind him over and over that she is not coming home. It is terrible! She just turned 66 the week before she was admitted to the hospital. She has only been retired for a year and was so OCD about everything and such a smart woman always on top of everything. God Bless everyone dealing with this and please pray for our family in the coming weeks. She was just diagnosed with CJD a week ago. It was confirmed with 2 spinal taps. They did the 14-3-3 protein test and the tau test along with other markers. I knew in my heart that it was CJD when I saw her declining so rapidly. I didn't want to admit that I was losing my mom. Holidays and the kids' events will be soooo difficult. She was supposed to see my 5 year old graduate from preschool 3 weeks ago but was in the hospital by that point. Hopefully we will have a cure soon! Never take your loved ones for granted because you never know when you will lose them.
By walter shaw jr. on May 31, 2014 - 9:09pm
I lost my mom on March 27th, 2014 of this year. It has been a very difficult journey.
By Arturo de la Cerda on May 31, 2014 - 11:38am
My sorry to read of your dad's passing. This monstrous disease is cruel and unfair to say the least. Ma dad courageously fought this monster for 4.5 months, before losing the battle 1 month after his 48th birthday. Take care, God bless...
By Jessica on May 31, 2014 - 2:04am
My dad was diagnosed with CJD on 4/16/14 and passed 5/19/14. This disease is so unfair. His symptoms started in Feb with slight confusion and he also started having "sun-downing" issues. We went to more dr. appointments in the 6 weeks leading up to his diagnosis than I've been to in 10 years. I feel like there needs to be more awareness about this tragic disease. Awareness will lead to more research and funding, and hopefully that will lead the way to finding treatment. My dad was an amazing guy and didn't deserve to die like this, no one does. Please contact Lori for my email address if you need someone to talk to, while there isn't much to say to help you feel better, it is good to be able to talk with someone who actually knows what you're going through.
By nora on May 27, 2014 - 6:23am
To Cynthia & jeannie,
Is it possible I could contact you both by e-mail somehow?
By nora on May 26, 2014 - 3:36am
I am sorry to read that your brother died from sCJD just 8 months ago, I am presuming he lived in the USA? Here in the UK people suspected of having CJD/vCJD are interviewed by the CJD surveillance team and a full history of their life is taken , certainly if the patients had ever had a blood transfusion the original blood donor would be traced and other recipients like your brother would also be traced and notified. Did your brother have the vCJD blood test which I mentioned previously to Cynthia developed by Prof.John Collinge? I read somewhere that you can request this test in the US and have blood samples sent to the UK Prion Clinic. I would be dismayed if your dear brother had not had this test due to the 43 pints of blood he was given, this test has been around since 2011. I read recently that scientists have discovered that sCJD can be spread by blood, why this information is not widely available is strange.