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By Jenny on December 17, 2014 - 10:47am
Darren~ My dad passed away at 67. It's the subtype of CJD that affects the duration of the disease. My dad had the MM2 subtype, confirmed by autopsy, which (I think) the most rare, and also the longest in duration. Yes, we did some experimental treatments, too, but ultimately I think the subtype (which in his case was both a blessing and a curse) determined how long he lived.
His first symptoms were visual, so a stroke or a brain tumor were first suspected. So his first MRIs were designed to look for those. Once those came back negative (for those), another round of MRIs was ordered. I don't remember the exact wording of those results, but something about the white matter looking different than it should have. And I don't remember how much longer it was until the "correct" MRIs were taken to get the diagnosis. I would guess it was a few months.
By Darren on December 16, 2014 - 5:45pm
Jenny: How old was your dad when he passed away? Was your dad given any experimental treatments to try to slow down the progression of the disease, or why did it last so long? How far into the treatment was his brain scanned by MRI the first time? Why didn't they do FLAIR and DWI the first time, this is common practice at imaging centers. When were the right MRI images taken which finally allowed diagnosis of the condition?
By Arturo on December 16, 2014 - 2:35pm
I'm sorry to read of your mom's passing. This monster of a disease can mimic itself as other diseases, and as every other disease is ruled out. It can dan drive us (as families and our loved ones themselves). My dad passed from sCJD. 12 years ago. He courageously battled this disease for 4.5 months, passing one month after his 48th birthday. Take care, God bless...
By Jenny on December 16, 2014 - 12:50pm
Darren~ My dad's illness was about 18 months in duration. It started with minor, almost imperceptible, memory problems; things that you wouldn't really notice unless you were with him all the time. But his memory problems persisted and progressed slowly throughout his illness. He was seen by many, many doctors and had tons of tests. We had doctors from around the country (and some international) involved in his case. Unfortunately, nothing could be done to help him. The last few (4?) months of his life, his decline seemed to speed up. He was only completely bedridden the last week or so, although he had limited mobility (in a wheelchair) for about the last month.
As far as his EEGs, I honestly don't remember specific results. I just remember that they were not indicative of CJD. I know many "experts" discount the EEG as a method for diagnosing CJD, as results are not always indicative.
Cecilia and Diana~ I am sorry for your losses. As all of us on this board know, CJD is an awful, cruel disease, and I'm sorry you've found yourselves here.
By Diana on December 16, 2014 - 10:52am
My mom recently passed away at 68y/o and had a probable diagnosis of CJD. It was frustrating when no one could initially explain why she was having these symptoms although she was being seen by a neurologist and was hospitalized few times. She even had an MRI done. She started with confusion and sleeping too much in July and progressed to dementia and neurological problems. Also, she had a dry cough since end of May. By September, she had hallucinations, impaired balance and gait, Jerking movements esp. to loud sounds, speech impairment. Her PCP diagnosed her with Dementia. We finally took her to a University hospital and learned that her symptoms were of CJD. She got diagnosed mid October and she died end of November. I feel like we didn't even have enough time to come to the realization that this was a fatal condition. I really wish doctors who were treating her had more awareness of this disease!
By Cecilia on December 16, 2014 - 9:41am
This disease is so evil. It took my grandpa away from me at an early age. He died at 91, way too soon considering his character and generous personality. I barely got to know him. It's the most inhumane way to die. It's much better to die in an accident, cancer, or war, fighting for your country. With this disease, you just die with muscle jerks, lying in a bed, being artificially fed, unable to control your bladder.
It's so horrible.
It killed by grandpa in just 5 weeks after diagnosis. He had memory issues for maybe 20 years before it, but not sure if that's linked to the CJD or not. Suddenly, he forgot where his own house was, then a few days later, couldn't touch his own nose with his hand.
I remember praying with my mom that he would recover, but just as we finished our prayer, he began choking on his own saliva in his hospital bed, and they had to incubate him. He passed shortly after.
God bless everyone who's suffering from this terrible illness and their families. May a cure be found soon.
By Darren on December 16, 2014 - 3:54am
Jenny; Also while your dad did not test "CJD positive" on EEG, did it show anything was wrong - Diffuse slowing? Delta activity? Or were all his EEGs just perfectly normal?
By Darren on December 16, 2014 - 3:53am
Jenny: When you say your father's illness lasted 18 months, can you describe what you mean exactly by 18 months? Did it start with minor memory problems, then lasted 1 year, then declined suddenly, or did it slowly progress? How long time until he was bedridden?
By Jenny on December 15, 2014 - 7:53pm
Brian~ I think a couple posts that we wrote got deleted last weekend when there were all the spam posts. I just wanted to encourage you to send your wife's MRIs to Dr. Geschwind at UCSF. He will request a certain type that your wife may or may not have had done. My dad's first neurologist didn't do the "right" type the first time, so no signs of CJD showed. I certainly hope your wife has something treatable. Have you gotten any indication what that may be? Not to be pessimistic, but my dad's illness lasted 18 months and he never showed "positive" on multiple EEG tests. sCJD was confirmed by autopsy.
I have read, and heard, that people with CJD (especially longer duration cases) can sometimes plateau (and it seems like they're getting better, since they're not getting worse), but they really don't improve. If your wife really does have days of improvement, that would be encouraging.
How old is your wife?
Again, best of luck.
By tina carlisle on December 14, 2014 - 4:26pm
I have just read about your wife. My mother passed from CJD in August 2011. Her EEG and MRI also appeared normal when first signs of symptoms began, however her decline was rapid. She was first tested in late Feb early March, MRI, 2 Spinal Taps (thought that the first one was a mistake because protein level in her brain was over 400) Nuclear brain study, 24 hour EEG, CT scans, only be diagnosed with on-set dementia. Fast forward late May, she went into a catatonic stage, we admitted her to another hospital where the neurologist took one look at her "normal" EEG and threw it in the trash, saying "what was happening to this woman was not what was showing in the EEG". She was the first one to mention the possibility of CJD, she ordered another spinal tap, sending this one to Case Western in Cleveland Ohio. Her 14 3 3 and her Tau both came back positive. She died 2 months later. Because of circumstances with the funeral home we had chosen, we cancelled the autopsy so we are not sure of the type of CJD, but I have no doubt in my mind she would have been definitely tested positive. If you are not satisfied with your doctors not doing spinal tap and sending for analysis, go to a another doctor. You are your wife's voice, you are her advocate. You might even call the CJD Foundation for info on how to contact someone at Case Western, they could look over your wife's medical record and advise. The foundation is a wonderful wealth of information. The unknown is so frightening and frustrating, I feel for you and your family. If you need someone to talk with, contact Lori
for my information. My heart goes out to you and your family. May you find the answers soon.
By Brian on December 14, 2014 - 3:52am
She has not received the official diagnosis of CJD. Her EEG is completely normal and so it the MRI. So, while 1 neurologist said it could be CJD, another neurologist is more hopeful, and notes it could be something reversible, since such a long duration of illness, without any changes on EEG or MRI is unusual in CJD.
I'm asking about your dad's symptoms because I'm wondering how do you "exclude" this monstrosity of an illness as a possible diagnosis? If the MRI and EEG are normal, even 10 months after her symptoms started, then what else can it be? They don't want to do those special spinal tap tests (14- 3-3 and tau tests) at our hospital, because they only do those when another objective test like the EEG or MRI shows something wrong (anything).
Did your dad's symptoms fluctuate? Like were there days when his memory and movement were better? In my wife, there are days when she's better and day's when it's worse, so it seems to go up and down, but on the whole, she seems to be declining.
I really don't know what else we can do at this point. I don't like the "wait and hope" that some neurologists are telling us. If it's something treatable, it should be caught in time, not when she has lost 90% of her cognition.
Dementia is truly the most devastating, horrible illness on this planet. There's nothing worse than watching your loved one lose their memories and abilities.
Really frustrated at this point, and don't know what else to do. We've gotten second opinion and all that, but if there's nothing to be seen on the MRI/EEG, then even those second opinions don't know what to tell us.
Please help if you have suggestions!!
By Arturo on December 13, 2014 - 8:50pm
I am sorry to read of your in-laws diagnosis. This disease creeps up so fast, it is very nerve racking to make such end of life decisions such as yours. My dad passed 12 years ago from sCJD my dad courageously fought this disease for 4.5 months. Passing one month after his 48th birthday. If you would like to keep in touch with me on a one-to-one basis. Please feel free to email Lori (at the email address above this page. She will be more than willing to relinquish my contact information. Take care, God bless...
By Marcy on December 13, 2014 - 9:26am
My 64 year old brother in law started having symptoms and went to the doctor just 2 months ago. He has been in John Hopkins for 2 weeks, being discharged to a hospice home soon. He can no longer swallow and they were going to insert a feeding tube last Friday, which my sister wanted. But after many delays and much discussion if it was the right thing to do, and after being told he had only 1-2 weeks to live, the feeding tube was not inserted. My sister is constantly second guessing this, and agonizing if she has made the right decision. Has anyone else had to make this choice? Please share your experiences and opinions.
By Carolyn on December 11, 2014 - 6:53pm
Your question of how long my Dad lived after his first symptoms appeared seems easy.. However, it is more vague. In hindsight, we believe the first symptoms were subtle memory issues about 4-5 months before he died. His medical records indicate he had concerns with his memory within that time period he did not share with us. They were periodic and while the memory issues would raise an eyebrow, they did not set off alarms. The alarm was set when suddenly on 7/3 this year he couldn't remember how to attach a swiffer pad. The next day he couldn't remember how to cook an egg. He requested my Mom take him to ER. He was admitted and discharged himself 24 hours later without completing requested tests.
Over the next 2-3 weeks he continued to suffer more losses in the area of daily activities such as grooming, using remote controls, etc. An MRI was done, and the report was moderate brain atrophy with a diagnosis of dementia. we had a follow up with the local neurologist 7/24. He sent us right to U of M ER where he was admitted. He was diagnosed by ruling every other possible disease out. Another MRI was done, and compared to the first. His neurologist found evidence of CJD in both MRI's, which an eye untrained in CJD could not detect. She told us that areas were "lighting up" which shouldn't have. His EEG results were indicative of CJD with peaks coming every .5 to 2 seconds which is the range for CJD. He failed every dementia test. He was officially diagnosed 7/27. He passed away one month to the day later.
I am sorry you are going through this. It is a terrible loss, but we do take tremendous comfort in the love and care we provided to him. I hope you too can find peace in knowing you did everything you could. I am more than happy to talk with you about his experience if it would help you compare notes and anticipate what may come next.
By Arturo de la Cerda on December 11, 2014 - 11:55am
I am sorry to read of your aunt's diagnosis. When our loved ones are diagnosed with a drastic of a disease such as CJD, you have never wished that it was cancer instead. My dad passed 12 years ago. He courageously fought sCJD for 4.5 months. Passing one month after his 48th birthday. I was 12 at the time of his diagnosis and passing. Since then I have made it my mission to spread awareness and advocacy of CJD and other Prion diseases. I think makeing the public aware of this disease is what our loved ones want us to do. If you (or anyone in your family) would like to keep in touch with me, please free to email Lori, at the address above this page. She will be more than willing to relinquish my contact information. Take care, God bless...
By Arturo on December 11, 2014 - 11:44am
I'm sorry to read of your dad's slow decline accompanied with this monstrous disease. Their are no words to express how heartbreaking and frustrating it is to watch a parent rapidly decline. My dad passed from sCJD 12 years ago. He courageously fought this disease for 4.5 months. Passing one month after his 48th birthday. I was 12 at the time of diagnosis and passing so those 4.5 months were one of the worst sets of months in my life. If you would like to keep in touch with me on a one to one basis, feel free to email Lori, who's email address is above the page. She will be more than willing to relinguish my contact information. Take, God bless...
By Gwen anastassatos on December 11, 2014 - 1:34am
My Aunt was diagnosed with this horrible disease this week!!!
By Angela Aelvoet on December 10, 2014 - 9:10pm
My Dad was diagnosed with CJD this year. Watching him rapidly decline and need the assistance of others for just about everything in such a short span of time has been very difficult. He's still young and healthy other than the disease affecting his brain. A man who was once in control of everything, now having to completely rely on others. This site has helped me to learn more about the disease.
By Amanda on December 6, 2014 - 1:55pm
Chris: How were your wife's memory after some weeks into the illness? Were there times when her memory was better, and other times when it was worse?
I've noticed in my 28 year old son, he has days when his memory is worse, then days where his memory is better, but overall, he seems to be declining. He also mixes up words and thoughts, like he wants to say tomato but says apple. is this also common in CJD? Did your wife experience that?
By Chris on December 5, 2014 - 10:00pm
I'm sorry to hear about your son. I have a daughter who is 28, too. I've read about young people getting CJD of one form or another, although it is said to be uncommon at that age.
You ask about trusting doctors. Of course, doctors have to learn about rare diseases that run the gamut from the plague to CJD, so we have little choice but to trust them as far as we can. And you've probably read that CJD is often mistaken for dementia. That said, I'm sure that doctors are hesitant to suggest a person might have CJD unless they are very confident that there is ample justification to do so. The doctors know that CJD is fatal and horrible, and they are aware of the fact that you know that, too, so I suspect they are very careful about putting forth CJD as a possibility. I trusted our doctors, but because this was a matter of life and death, I did seek a second opinion by sending all my wife's records to Dr. Geschwind at UCSF; however, I did this only after our doctors here had suggested CJD, something they did gradually, and very gently, until I was willing to accept the possibility.
If you read the posts here (there are 145 pages of them) and notice other symptoms that are similar to those of your son, you might make a list for his doctor, and approach the doctor about ordering one of the tests that require spinal fluid (CSF), meaning the 14-3-3 and/or the RT-QuIC test. Maybe, they'd even order one if you simply asked for it--that depends upon the doctor. Nowadays, drawing spinal fluid is guided by ultrasound, so it's usually not as painful as it was in the past.
It must be frustrating to hear them suggest it is psychiatric. However, I've read about several other cases where it was initially thought to be psychiatric and it later turned out to be CJD. The problem is that those are the only ones I would have heard of. This is because the cases that were thought to be psychiatric and turned out to actually be psychiatric in the end (and not CJD), or the ones that turned out to be something else altogether, would probably not be reported on forums dedicated to CJD, such as this one.
There are some websites in the States and also in the UK that have detailed symptom lists, although in the UK, their main focus tends to be on the mad cow disease form (vCJD), which allegedly has not occurred in the US except in people who were exposed abroad. Even those numbered only four cases according to published reports.
By Chris on December 5, 2014 - 9:10pm
Jenny and Brian,
Thanks for reminding me, Jenny. Toward the end of the weeks of tedious waiting for the results to the 14-3-3, which seemed to take forever, I did request all my wife's medical records and test results up until that point. I sent those to Dr. Geschwind at UCSF, too. Unfortunately, they arrived the Friday everyone had left for a long weekend, but he examined them as soon as he returned, and got back to me right away, saying everything resembled "classic CJD."
All the results seemed to arrive that weekend, so by the time he got back to me, we'd already received the results of the arboviral panel and the 14-33, and we were anxiously awaiting the results of the RT-QuIC test.
By Derek on December 5, 2014 - 5:21pm
Basu Hombal - what do you mean " It took almost 9 months for the symptoms to appear"? She had no symptoms for 9 months, or just minor issues like memory loss?
By Basu on December 5, 2014 - 10:18am
My Mom has been identified with Sporadic CJD. It took almost 9 months for the symptoms to appear. MRI and EEG taken on NOV 20th 2014 fits the pattern of classic CJD. Today she is unable to walk and her cognitive skills almost gone. It is very tough for our family to see her suffer.
By Amanda on December 5, 2014 - 5:23am
Hi.. My 28 year old son has dementia. It started about 1 year ago and has been progressing. He doesn't have any movement issues, like he can touch his own nose and balance.. but he doesn't remember what happened yesterday. The doctors think it may be psychiatric. He's had several tests, like many MRIs, EEGs, blood tests... They all come back normal. The MRI has been reviewed even by some docs who are familiar with CJD, they say it's likely not cjd. What should we do? Does it sound like CJD?? We're really scared! Can you trust doctors even though they have experience with CJD?
By Charles Horn on December 4, 2014 - 11:40pm
My father was diagnosed with CJD the day before Thanksgiving. Our family is crushed. My father is still in good spirits. This disease is horrific.
By Jenny on December 4, 2014 - 5:45pm
Brian~ I'm sorry to hear about your wife possibly having CJD. I found the UCSF website on CJD to be most thorough and helpful. We (and I know many other people on this board) had Dr. Geschwind at UCSF read my dad's MRIs. He is considered "the" expert on diagnosing CJD through MRI, although as Chris said, it can't be confirmed until autopsy. You don't need to be in the Bay Area; contact his office and scans can be mailed.
Every case is different, and that's part of what makes diagnosing CJD so difficult. Some things may fit, and some won't. My dad never showed "positive" on the EEG tests (multiple times), nor did he have the 14-3-3 protein. But he did have cortical signal abnormalities (hypo or hyper intensities) in some of his MRIs.
Best of luck to you. Post again if you have more questions.
By Brian on December 4, 2014 - 5:14am
Thanks a lot for the detailed response. If you ever get the nerve to go through the hospital records, do post the descriptions of the MRI and EEG here. I'm really wondering how they would "term" it.
Thanks again for sharing your story..
By Chris on December 3, 2014 - 6:11pm
We saw 12 doctors at the main hospital where Laura stayed for 20 days before entering the hospice for the final 6 days. The hospital had won some awards and posters everywhere proclaimed it to be among the top 15 in the USA. Of those 12 doctors, 4 were neurologists, 4 were from infectious disease, and 4 were hospitalists. Only one had seen a case of CJD and that was decades earlier.
I had never seen a brain MRI before, and the neurologist sat me down for 45 minutes in front of a monitor and showed me all the images, explaining them as she did so. To my untrained eyes, it seemed like there were big holes everywhere, but the neurologist was quick to inform me that the holes caused by CJD would not be visible on the MRI. Her many comments were along the lines of “This area should not be cloudy” and “These two areas should look similar but they do not.”
She may have mentioned "hypointense" signals on the "ADC Map,” and she may have stated that the EEG show the periodic complexes (PC), but if so, those terms meant nothing to me, and I do not recall. I have all of Laura’s hospital records, although I have avoided perusing them, so far, but I could check and see if those characteristics were mentioned.
I asked the neurologist if any of these observations pointed to CJD in particular, and at that stage, because there were a couple of other neurological conditions being considered, she replied that, based upon the MRI alone, it was a tossup, but that the EEG patterns were more consistent with CJD. Apparently, the characteristic EEG patterns of the twitching and spasming that Laura was suffering are well documented, and the neurologist had been able to look them up. I suspect this is not the case with the MRI.
Later, after the second MRI and after the results of many tests came back and eliminated other conditions, was the word “strong” placed in front of “possibility.”
One problem was that we assumed Laura’s symptoms might have been caused by an insect bite. We were always avid medium- and long-distance hikers, to the extent that earlier in the year, we had founded a magazine (Camino Quarterly) devoted to the 500-mile Camino de Santiago hike across Spain, which we had recently completed. We live near the Great Smokey Mountains National Park, in which we hiked a lot, and that park boasts the greatest bio-diversity of any area of comparable size (800 square miles) on this planet, or so they claim.
On May 29, we did one of our most strenuous and remote hikes in that park, and it was teeming with insects. On the night of May 30th, Laura started twitching in the middle of the night, actually, it was borderline thrashing. She had had some minor twitches in her sleep off and on for some weeks, although I rarely was awakened by those events. However, there was no way to sleep through the twitching that began around 3am in the morning of May 31, less than 48 hours after our hike of the 29th. More importantly, there was something “insectile” about these new movements. They resembled an insect twitching after being bitten by a spider, or a spider twitching after being sprayed by a neurotoxin.
Because Laura was an epidemiologist with experience in infectious diseases, she was trying to advise the doctors about where to get the arborviral panel done for a good price during the first few days that we were in the hospital. And, naturally, we all hoped that it was simply an insect bite. Another hike in mid-May had put us in contact with a spray from a waterfall near an area where 30 years ago, a neurological disease had been spread by such exposure. There were many opportunities to hope that such was the case with Laura. Perhaps our strong feelings in this regard led the team in the wrong direction at the beginning.
Although the twitching while sleeping continued, we continued hiking in early June, and there weren’t any other symptoms of significance until the evening of June 17th, thus, almost 18 days later. We spent the entire next day in an emergency room, but they sent us home, telling us that she was fine to go home and that they were not in the business of making diagnoses. For two days following that, she appeared to be back to normal, even when I took her to another hospital for a spinal tap at 4pm on Friday, June 20th.
The hospital where we went for the spinal tap wouldn’t let her come home because she failed the finger-to-nose test, and by Monday, she was in a light coma. She came out of the coma from time to time, but less and less as the days wore on.
Sorry, I rambled on quite long with this...
Hope this helps,
(Lori has my email)