14-3-3 protein in spinal fluid & possible connection to dementia?

Posted by jen26 @jen26, Jul 22, 2021

Hello!
The results of my husband’s spinal tap were positive for the presence of 14-3-3 protein. All the info I’ve come across states that this is present in people with cruetzfeldt Jakob disease. When I asked the neurologist about this, he said there’s no way he could have cjd because he’d be dead by now. Does anybody know anything about this protein in relation to lbd?

Interested in more discussions like this? Go to the Caregivers: Dementia group.

Hello:
This protein might have a connection with Parkinson’s and dementias.
https://www.michaeljfox.org/grant/14-3-3-phosphorylation-biomarker-parkinsons-disease
https://www.researchgate.net/publication/11468553_14-3-3_Proteins_in_Lewy_Bodies_in_Parkinson_Disease_and_Diffuse_Lewy_Body_Disease_Brains
These are just a few articles.

Search 14-3-3 protein and Lewy body dementia.

Hope this might provide some info for you.

Peace
Larry H

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While I adore our neurologist, it has been a difficult journey trying to get him on board with LBD. He will only put MCI as a diagnosis. Finding doctors that are familiar with LBD in our area has been impossible. Through this forum, I have learned that this is common in many areas of the country…and quite often I am the only advocate for my husband. Many times, it is quite obvious that I am more informed than the doctors, and I am the one that has to refuse medications. Fortunately Mayo Clinic has been readily available through the patient portal and answers many questions about medications for us. I wrote all of this to say…..in many cases, the caregiver has access to a lot of knowledge that benefits the ones we take care of and we may often be in situations where we have to cbeck/challenge our local doctors recommendations. Hope you find the answers you are looking for.

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@teacher502

While I adore our neurologist, it has been a difficult journey trying to get him on board with LBD. He will only put MCI as a diagnosis. Finding doctors that are familiar with LBD in our area has been impossible. Through this forum, I have learned that this is common in many areas of the country…and quite often I am the only advocate for my husband. Many times, it is quite obvious that I am more informed than the doctors, and I am the one that has to refuse medications. Fortunately Mayo Clinic has been readily available through the patient portal and answers many questions about medications for us. I wrote all of this to say…..in many cases, the caregiver has access to a lot of knowledge that benefits the ones we take care of and we may often be in situations where we have to cbeck/challenge our local doctors recommendations. Hope you find the answers you are looking for.

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Our words are so true concerning getting docs who are fluent in Lewy and even care to learn more. I am still able to be somewhat of an advocate for myself. My wife is becoming more involved and has been going to all of my appointments with me for the last few years.
Yes – challenging t=your docs is sometimes necessary. Especially the specialists that aren’t familiar at all. They dont understand the meds that arent great for me to take. We push back on most of new meds.
I” have a list of meds that LBD patients should avoid and give it to all of my docs. Even then they still try to prescribe me something on the list or in that family.
Keep up “educating” the docs.
My Mayo neurology and psych teams are great. They understand pretty well – albeit the occasional mix up with a specialist outside of neurology.
As you mentioned – the portal is your friend. The responsiveness to my questions is great.

Peace
Larry H

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Recently with crutzfeldt-jacob brain disease. Is there anyone out there who can identify with what I am going through. 67 yr female living in Florida. I am aware what I am up against no cure. Started seeing objects that arent there.. sleep disturbances.. severe anxiety. Have wonderful Neuro teeam here. But i always hope that maybe there will be a cure someday.

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@mountainsueh

Recently with crutzfeldt-jacob brain disease. Is there anyone out there who can identify with what I am going through. 67 yr female living in Florida. I am aware what I am up against no cure. Started seeing objects that arent there.. sleep disturbances.. severe anxiety. Have wonderful Neuro teeam here. But i always hope that maybe there will be a cure someday.

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Welcome @mountainsueh, I can't begin to imagine or identify how difficult it must be for you. While we wait for other members who may be able to share more information or experience with Creutzfeldt-Jakob disease (CJD), I thought you might like to read this Mayo Clinic patient experience.

Back from the brink and looking forward: Karen Detweiler overcomes rare neurologic disorder:
https://sharing.mayoclinic.org/2021/06/22/back-from-the-brink-and-looking-forward-karen-detweiler-overcomes-rare-neurologic-disorder/

It's good to hear you have a wonderful Neuro team. Are they part of Mayo Clinic Jacksonville?

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I have read the account of this lady numeous times. God Love Her and her family. My Neuro team is in Fort Myers where I live. My daughter tried to reach out to all of the Mayo locations in the country. Everyone she spoke with said the same thing…. Waiting time to be seen could be over a year!! They all are just too busy!!! So here I sit just waiting as have no idea how long I have had this. Lewey body also has shown up and dealing with that also…. Guess it is just in the Master Plan of life. I do take meds for anxiety to help in dealing with this. Gets better.. tried to contact 3 different brain centers to donate my body for research and was denied by all 3!!! They want my brain but only my brain as an autopsy and donation of other much needed organs is prohibited as there may be diseased tissue frrom this horrible disease. No driving..working.. all I hear is about what I CAN'T do and not what I can do. Yes I do fall alot due to my balance, shaking and sometimes tremors, but I AM NOT GONE FROM THIS WORLD YET!!!! Take it one day at a time. Thanks for listening. I really hope no one replies as NO ONE on earth should have this disease and if so…. God bless you and your families.

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