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Old 06-02-2018, 05:52 PM   #1
Payton
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Question Any advice ?

How can I make sure these certain tests will be done with lumbar puncture?

I have always had issues with doctors and many people never listened to me and just disregarded, not take me seriously but one thing he did recently when I took the paper work to him and tried engaging with him is order a lumbar puncture.

It is mainly RT-QuIC, 14-3-3 spinal fluid tests to check for prion diseases/CJD. Im having major neurological problems. The prion disease surveillance center before sent it to me and told me the paperwork needed to be done and the doc in the appointment pretty much ignored the paperwork i had and said its gonna be done vaguely and him and his nurse acted condescending again typical and made it hard for me pointing to other things. I think he will order but If it goes through I just wanna be 100% sure these specific tests will be done before I get the lumbar puncture, otherwise it will be useless because thats the sole reason i came to him. That cant be too much to ask right?

Does anyone know how I can be fully sure? I Dont think I will be able to talk to the doc again, should I try and ask when they call or ? Just confused

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Old 06-02-2018, 08:42 PM   #2
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The RT-QuIC test is a reliable test for sporadic CJD.

High diagnostic value of second generation CSF RT-QuIC across the wide spectrum of CJD prions | Scientific Reports
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Old 06-02-2018, 10:04 PM   #3
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Thank you kiwi for the response but Yeah I already knew that thats why I went to this specialist to get this specific spinal fluid marker testing along with others like it but mainly that, I must have not worded it properly but my question is how can I be sure that these certain tests are going to be done in the spinal tap before I get it? What could I do ? He was vague about it and ignored the paperwork. maybe he didnt need it but i just wanna make sure these tests gonna be done, its very important. everything else is a mess i at least want this one thing to be done right
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Old 06-03-2018, 04:12 AM   #4
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What they propose doing is taking a sample of your CSF from the spinal tap.

It will then be used to run two (possibly three) tests.

First, if your CSF contains the abnormal form of prion protein associated with CJD it will be assayed for its ability to convert the normal form of prion protein (obtained from hamsters as a recombinant protein) into its abnormal form.

Second, they will measure the levels of a protein called 14-3-3 in your CSF; elevated level of it are linked to CJD.

Finally, they may also measure the levels of a protein called Tau in your CSF; elevated levels of it are linked to a number of neuro-degenerative diseases.

If you are unsure that these two (or three) tests will be done, ask the neurologist to show you their protocols. They will be quite technical but I can translate them into everyday English for you.
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Old 06-03-2018, 03:50 PM   #5
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Quote:
Originally Posted by kiwi33 View Post
What they propose doing is taking a sample of your CSF from the spinal tap.

It will then be used to run two (possibly three) tests.

First, if your CSF contains the abnormal form of prion protein associated with CJD it will be assayed for its ability to convert the normal form of prion protein (obtained from hamsters as a recombinant protein) into its abnormal form.

Second, they will measure the levels of a protein called 14-3-3 in your CSF; elevated level of it are linked to CJD.

Finally, they may also measure the levels of a protein called Tau in your CSF; elevated levels of it are linked to a number of neuro-degenerative diseases.

If you are unsure that these two (or three) tests will be done, ask the neurologist to show you their protocols. They will be quite technical but I can translate them into everyday English for you.
Thanks for the response kiwi if I have any problems I may ask you my mind is really ****** and I'm still new to a lot of this I'm aware of procedures just nervous that tests may not be done I talked to the center myself and went to the neuro and asked several times I'm really hoping it's all done especially rt-QuIC I know the prion disease pathology surveillance center is the only place in my country that offers it so it has to be sent there just want it to go through I believe I have sporadic CJD I've had the red flags and consistently going downhill it's been so hard I can't put it into words I want to try and get some type of closure before it gets more worse.
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Old 06-03-2018, 04:13 PM   #6
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and spinal tap you know is not like blood work or something so thats why im trying to find out how to make sure these are gonna be done before i get it or otherwise its kind of a waste
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Old 06-03-2018, 04:22 PM   #7
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You really will only find out if you keep asking them and get confirmation on the answer..
If the doctor won't help or respond , maybe ask at the main desk for a manager or case assistant to clarify for you?
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Old 06-03-2018, 04:43 PM   #8
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I meant I had to ask him several times in the appointments taking the paperwork and everything to him to even entertain this, I know he knows there are problems but if he and his wasnt vague there wouldnt be these worries. Havent talked to them since

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Originally Posted by Jo*mar View Post
You really will only find out if you keep asking them and get confirmation on the answer..
If the doctor won't help or respond , maybe ask at the main desk for a manager or case assistant to clarify for you?
Thanks I will try that
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